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:

• 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!!

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!!!!

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!!!

Interesting about IBS

I was reading one of the sites about IBS and found this interesting.
I have every single one of these:

Other Symptoms May Accompany IBS

Persons treated for IBS commonly report upper gastrointestinal (GI) symptoms. About 25% to 50% report...

• Heartburn
• Early feeling of fullness (satiety)
• Nausea
• Abdominal fullness
• Bloating Read More

Other GI symptoms also reported include...

• Intermittent upper abdominal discomfort or pain (dyspepsia)
• Feelings of urgency (the need to find a restroom fast)
• Feeling of "incomplete" bowel emptying

Non-GI symptoms also occur. Sometimes, but not always, this may be due to an overlap of IBS with another condition. These symptoms include...

• Fatigue
• Muscle pain
• Sleep disturbances Read More

Other symptoms tend to occur with more severe IBS such as...

• Low back pain
• Headache

Symptoms sometimes seem contradictory, such as alternating diarrhea and constipation. It may help to keep a Symptom Diary so your doctor can see how your symptoms change over time and in relation to diet, stress, and other factors. 

BUT!! I also have ALL of these as well! 

Symptoms NOT Characteristic of IBS

Symptoms of...

• anemia,
• blood in the stools,
• unexplained weight loss, or
• fever

are not characteristic of IBS. You should alert your physician immediately if you are experiencing these symptoms.

So....hmmm.....thinking.........

Visit to Boston

Wow, I can't believe it was today! God is sooooo good!!

I will try to be as brief as I can. The way that they work things at Beth Isreal is unique. I saw two doctors, basically a specialist and then a special specialist. LOL Dr. Trinidad was the first doctor. He was awesome! We, both hubby and I, really liked him and felt as though I was listened to and well tended too. We also liked the big wig doc too, but we really liked the other!

So, Dr. Trinidad did my exam and took all the notes. So he is the one who really did the appt and the other doc, Dr. Ch..can't remember his name, just came in after and listened to Dr. T say what I said to him and then he gave the final thoughts. So so so so so...what did they say!!!?

Dr. T did this thing during the exam that I felt was strange but made a lot of sense. He put his stethoscope on my stomach and then shook me back and forth. He was listening to see what he could hear in my stomach. He heard a full stomach! But, I hadn't eaten anything but two bites of a donut, 1/4 of a crossaint, and some drinks. There should not have been that amount of food in my stomach. After he shook me like that I became so nauseous and extremely gassy. I mean like belching ridiculously! With all I told him and his exam, he honestly at this point says it is gastroparesis s. Which is what I thought also. Then he said he would like to see these things happen:
Repeat Colonoscopy
Stomach Emptying study
Test for Celiac

Then the other doc came in and he agreed. LOL He also said at first that I have IBS, which is more that what I thought. IBS is an actually motility disorder. It can affect lower or upper or both. He believes that if it isn't GP then I have a very severe case of IBS through my entire system. But, that was before he knew I had NOT had the emtpying study done yet. So......

We changed my meds around a little. Previcid in am, Zantac at night, and then he wanted me to start taking Probiotics....but I already do. So he wanted me to take this one called Align. Well, I remember that a good friend of mine always said that the Pearl ones are the best and I got two more of those for less money and they are the exact same thing! So I got those in stead. They also did another test for Celiac. If the Celiac comes back negative then he wants me to see the Celiac specialist to be tested or at least explore the possibility of Gluten Intollerance. Honestly I am not surprised at all. The other one they wonder is lactose.

So, I got answers!! Dr. T was very concerned about me and my health problems. Both doctors said that no matter what exact one it is I DO have a motility disorder. Also, Dr. T said that sometimes the emptying study isn't helpful for dx GP because I could be having a good day when I go in but then the  next day is a terrible day and nothing goes down well. So we have to pray that when I do go to get it done that I am sick! LOL I know crazy thing to pray for. Dr. T really believes that I have it. Even without the test he was ready to treat me for it!! He didn't like the way  my stomach sounded when he shook me all around. LOL

I am so happy and thankful for God's anwers to give us answers or at least to be leading us in the right direction.

How am I feeling now? Well, I am back to mostly liquids. When I do eat solids it's not a happy thing for me. Oh well. At this time I am going to just go on the assumption that I have GP and look into how to manage it. Please understand that this is a life long thing. There is nothing that can be "done" to correct it. I even contacted a special herbalist/holistic nurse practioner and she told me that there is nothing holistic that can be done. I need to do what my doctor says. So please don't tell me I just need to do x y or z and I can be better. Believe me, we are exploring everything we can to help. I am going to have to  make huge changes to my diet to see if it helps, cutting sugars, dairy, gluten, and caffine. I will battle this for the rest of my time on this earth. WIll I always be as sick as I am now, prayerfullly  not, but if I am I have a great God who has promised to take care of me! I will trust him! I must!! If you have questions, please ask!!

Here are some sites on GP:

http://www.mayoclinic.com/health/gastroparesis/DS00612

http://digestive.niddk.nih.gov/ddiseases/pubs/gastroparesis/

Here are some for IBS

http://www.medicinenet.com/irritable_bowel_syndrome/article.htm

http://www.aboutibs.org/

Hope that helps ya some.

In Christ,
Robin

I was dx with Fibromyalgia in 2010...

I never really looked into it or thought more about it. I didn't think in my wildest dreams that Fibro could be the cause of anything with my gastro. Well, it is possible.

Today I had an appt with my primary care doctor. She is just awesome and I am very thankful for her. We talked about everything I am going through, not just gastro. On here with most of you online I have only shared my gastro stuff. There are many other issues:
Daily headaches
Gastro stuff
Cycles off
Chronic Fatigue
Pain all over my body
Weakness, lsoing strength
"Depression" I hate that word. It is just the word they use for excessive Serotonin
Memory Loss
Memory, Brain, fog
Chest Pains
and more...just tired of listing them....lol


So, my doctor agrees with me that with m y age, the fact that I don't drink, smoke, or eat excessively junky, and I take vitamins regularly that there has to be something that is causing all this. She truly believes that it all comes down to one thing. But, we don't know what that one thing is.....Lupus, Fibro, Thyroid, etc.... So now we are on a quest to rule out all we can and go with what we know. So I did some of my own research tonight and found some very interesting articles about Fibro, which I was dx with back in 2010, and gastro problems. This one really hit the nail on the head and made so much sense
http://nomorefibro.wordpress.com/2011/09/28/the-big-six-gi-problems-a-common-symptom-of-fibromyalgia/
Another idea we are looking into is Lyme's Disease. We don't really think it is that but why not rule it out. If this is all just Fibro then all my tests will continue to show "nothin is wrong." Why? Well, all these things are just symptoms of Fibromyalgia. It is the Fibro that we will have to take care of. Hopefully it is that easy.....

Please pray as we begin some testing to see if we can pin point all this and narrow it down to something. That is her goal!!

Next week I head to Boston to see the doctor there. I am interested to see what he says. So, we shall see what happens.

Lupus...????

After reading a few posts this weekend on a support group I am on,  I had a memory jog. A few years back I had a second trimester loss. They did lots of tests to see if they could figure out why. Anyway, one of those tests showed I had something in my blood that had to do with Lupus. I think it was ana or some like that. So I was sent to a rheum doc. He said no and dx me with fibro. Ok.... fast forward to the last couple of years. Now I am having all these GI issues. So I looked up Lupus tonight....um....  wow!

So many things on there are me. Over the last few years I have developed many different health issues.
- Extreme Anemia is one. They can't find a cause... hmmm
-Fatigue, which we always chopped up to the iron issue. It may be....but could it be Lupus?
-I have always had great skin. Recently it seems so rough and flaky..I can't explain it.
-Headaches all the time. I can't seem to find a reason for them either. It just  happens out of the blue.
-Joint pains....constantly. I always do. That was one issue when I went in. He said since I wasn't "swollen" then most likely not. I tols him I was always puffy in the am and in the evenings.
-A strange thing I noticed and was actually going to mention to my family doc this week...fever. I seem to often have a temp between 99.8 and 100. I mean daily for a bit now. I keep waiting to get really sick and nothing. Seems strange. Then the next day I can take it and it's back to normal range, but then in the evening back to higher...or even the next am. Strange.
-Hands and feet swell daily.

These are just a few of the things I noticed about the list I was reading. Another thing is the depression. So, now something else to  mention to the doctor when I go to Boston. Maybe it wasn't advanced enough at that time to dx me. I just don't know. But to now be having the GI issues I am with "cause." Not to mention my exhaustion. Lots to think on here. Am I now thinking I have Lupus and jumping to conclusions..no. Just something to think on and mention to my doctor.

You have to understand that I am having all these health issues and I am only a 33 (almost) yr old woman. I don't smoke, drink, or eat just junk food. I have been a pretty healthy eater for a long time. We don't do a lot of processed stuff and I make most if not all my meals from scratch. We even ate gluten free for 5 yrs and we ate organic and natural for years as well. (cant afford it now) I also take my vitamins and suppliments. So I look at all that and while I am overweight I am not grossly obese. So I need to lose weight, yes, but it can't be the cause of all my issues. So I am searching. I am being my own advocate. If I don't research and have questions I won't find answers. Also if it is Lupus it would make sense. My mom has RA. So it is possible those genes were passed down in the form of Lupus, yes that is possible. Again, not saying that is it, just wondering.

I have an appt with my primary doc this week and then the Boston doc next week. I talked to my doc this last week about some issues that she felt she wanted to see me about. Some are the issues I listed above and some are other things. I am sure she will be interested in this as well.

Thank you for your prayers. I have actually been able to eat a little more solids. Although I think I have over done it and am now paying for it. I am hurting pretty bad and my stomach burns, but with these issurs you have to take the chance and see how you respond to them. I told hubby tonight "I am done with food. Why do I bother?" But I know I will feel differently tomorrow. LOL

Again, God is good!! HE is always good!!! He will and does sustain me. He will and does give me strength and grace. I am thankful for my salvation and pray that I can love according to his precious Book!!

Hard day

Well, last night I didn't sleep well. I had lots of chest pains, lower back pain, and just insomnia sort of. I couldn't get comfortable and I just felt blech. I just wanted to cry. Today...same.

I need to get blood drawn monday. I am thinking my iron has really plummeted. I am so tired. I mean like can't keep my eyes open after naps tired. I hate it. I feel so useless in my home. If I push  myself to get things done then I am even more exhausted. My brain also seems very foggy. Not sure all of what's going on with me, but I know I feel lousy and I just want to whine! LOL

BUT...you know it....God is good!! He is. How do I know? I am not dead. My husband hasn't left me due to not wanting to deal with an ill wife. I still have a home in heaven and that will never change. I have 6 amazing children!! We have a home, a car and a van, and my hubby has a great job. I have an appt in 2.5 weeks to hopefully get a few more answers....or just wait longer...LOL

Anyway, This is the day that the LORD hath made, I WILL rejoice and be glad in it.....while I take a nap. LOL No I will. God has a reason for me to walk this road. So I will walk, hand in hand with my Jesus I will walk. There will be times he will lift me up into his arms and just carry me, but I will still be walking, just in his strength alone...but isn't that where he wants me anyway? Walking totally trusting and leaning on his strength. Yes I do believe it is.......Like I said....God is good.

I love you my Jesus......