An update- Some thorns, some roses

It's been a while since I updated on my health status. 

Well, lets start with some good news. I am fully on the Lyrica and off of any painkillers and its working! I'm sleeping better also with that and the nortryptiline. 

My migraines have even gotten better and in all this time I've only had one ER visit. So, I think the Lyrica may be working on my head also. I'm still taking all of my head medicine, but I may be almost ready to wean down. My second Botox treatment was a bust. But, I'm going to go for three. I'm hoping I get lucky. If I don't, then I'm done with those treatments and will be seeking another neurologist. 

And now some bad news. I had my third celiac plexus block to help with my colon pain. My colon pain has gotten worse and the medications sometimes totally stop working so I have to take laxatives.

Over this past weekend, I gradually began to get backed up and bloated and we had been out. As soon as I got home I took a laxative. 

That didn't work. And I started to bloat. By Tuesday I was in so much pain and looked like I was 6 months pregnant and couldn't even bend over. The GI doctor said to take charcoal capsules. I've been taking them for a day now and they are starting to help finally. 

This is getting ridiculous and my GI doctors need to come up with a better plan then all of these medications that aren't working or my insurance will not fully cover all of the doses necessary. I will not get my colon removed at my age! I need to be able to have a quality of life!

I just saw my rheumatologist and I had a nice chat with him. It seems that my older daughter is showing signs of Ehlers-Danlos Syndrome. She was also just diagnosed with reflux and irritable bowel syndrome. He seemed to think that was interesting. He said I do have signs of it including stretchy skin, hypermobility, pain, fatigue, and the major GI issues of colonic inertia and GERD.  He said I might have a minor case of EDS. 

We have an appointment with a geneticist for my daughter in late March. So, I guess we will go from there! 

Definitions

Ehlers-Danlos syndrome (EDS) is a heterogeneous group of heritable connective tissue disorders, characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. http://www.ednf.org/

(GERD) happens when a muscle at the end of your esophagus does not close properly. This allows stomach contents to leak back, or reflux, into the esophagus and irritate it. http://www.nlm.nih.gov/medlineplus/gerd.html

Irritable bowel syndrome (IBS) is a problem that affects the large intestine. It can cause abdominal cramping, bloating, and a change in bowel habits. Some people with the disorder have constipation. Some have diarrhea. http://www.nlm.nih.gov/medlineplus/irritablebowelsyndrome.htmlq

Thanks for reading! 

Please visit my giving back page on Facebook https://www.facebook.com/Braceletsandstickers4smiles

Please feel free to leave comments, prayers, encouragement, or even questions and I will get back to you! 

Lisa 

Feeling Better!

9/14/13

Hello! I know it's been a while! I've been really busy starting a page on Facebook making crocheted bracelets and mailing stickers to ill children. It's such a great feeling when I see the pictures of the kids when they get their mail. I call it SMILE mail!

So much has happened since my last post- mostly good!

The first thing is that my pain doctor has switched my pain med to Lyrica and I'm doing well on it. My pain is at a tolerable level and I'm totally off of the bad pain med. Lyrica is used to treat fibromyalgia. My pain doctor also suggested for my horrible colon pain to get a celiac plexus block. That is a shot in the back to block the nerves and pain in my colon.

The procedure was not a fun one. I had to be sedated for it and woke up very sleepy and was like that the remainder of that day. Then for about a week after I had a horrible side effect of back pain! But, I didn't have colon pain! Finally the back pain went away and I enjoyed about a week of not much pain.

I saw the colon surgeon and told him that I added fiber gummies, magnesium, B6, and a probiotic to my regimen and I felt better. So, he felt comfortable in releasing me from his care!

But, just a few days later I think I had a flare and got all backed up again and had to take two days of  laxatives. Thankfully, they finally kicked in and I felt better. My GI is keeping everything as is. My reflux is doing fine on the dexilant in the morning and Famotadine at night and amitiza twice a day. And he gave me more free samples.

Remember whenever you go to a doctor, ask for free samples of whatever medicine you're on. You can save so much money. Also, get online and pull up that medicine website and see if they have a saver discount program. I just paid $5 for my last prescription of Dexilant, as opposed to $60!

Now, onto my migraines. I saw my neurologist and he is going to schedule me for my second round of Botox in about two months. They are still not under control and just recently I fought a bad one for almost a week. Thankfully, it finally left without me needing an ER visit. I'm still on Topamax and butalbital and I had him call in my last resort sumatriptan nasal spray. 

So, that's about it. I'm feeling better, more stable. My older daughter will start taking dance during the week so I need to prepare myself to have energy later on. I also want to start going to my church on Wednesdays because they have dinner and bible studies for kids and adults. I just have to find a way to siphon the kids' energy lol! My little one is doing great in preschool and loving dance also. 

Please visit my new page on Facebook. I'm giving back and making ill children happy. It's been very rewarding! https://www.facebook.com/Braceletsandstickers4smiles

Please feel free to leave a note, or a question! I will respond to it next post. 

Meet my Family, and Spoons!

Hello! I hope you are all well. I survived a week of school preparations, orientation, and meet the teachers the last week. And this weekend were both my daughters' birthdays. The youngest one turned four yesterday and the oldest one turned ten Sunday. And we still have to set up their birthday parties. I was able to go food shopping to get lunches, snacks, and some easy things to make dinners and frozen dinners in case I get too tired.

Last post, I forgot one other invisible illness I have. I forgot because it is not symptomatic. I have two leaky heart valves and I'm followed by my cardiologist every 6 months. I was diagnosed with mitral valve prolapse when I was young. But it isn't that. They are leaky valves. They just need to be watched, no medication is needed.

So, I said last time I would introduce you to my family. I posted family pictures at the bottom. But I labeled them wrong, but I think you can figure out who is who.

 I'm going to start with the little one first. K is four and just started pre kindergarten. She was born by emergency C section at 30 weeks and weighed 2 pounds 7 ounces. She spent 130 days in the NICU and after that, life has been quite a battle. I almost died during the pregnancy from preeclampsia, HELLP! And vasa and complete previa of my placenta. I also vomited the entire pregnancy, and not normal, but excessive- hyperemesis. 

K has severe oral feeding aversions and has a G/J feeding tube to give her the nutrition she needs since she eats less every day. She suffered from severe gastroparesis (stomach paralysis), but is now healing from it. But she still struggles to even maintain weight.

My older daughter A is 10. She is super intelligent, very flexible, and absent-minded all at the same

time! She was a great baby and swallowed down her bottles in about two minutes flat and weighed 7
pounds 12 ounces at birth. She also wound up in the NICU for breathing difficulties. They were
quickly resolved and I took her home at 5 days. She caught the normal kid illnesses, plus strep and pneumonia twice. I caught it early since I had taken nursing when I was just out of high school and remembered the signs! 

A is helpful around the house, but also feels the stress of my illnesses and her sister not eating. I try to make sure I pay her special attention and compliment her whenever I get the chance on things she does. 

Lastly, is my husband of almost 7 years- P. I've known P since 2000 and we finally married in 2007. We did things a bit backwards and did the marriage thing after having A. But I think we got it right now! P is super intelligent, from India, and is a hard working computer engineer. He takes good care of all of us. 

I know P gets very stressed when I don't feel well and he works so hard already and has to come home and finish getting the kids ready for bed, give them their bath, make lunches/snacks for school, follow up with teeth brushing, etc. by the time he comes home, I'm so tired most days I can barely even talk. 

So, that is my family!

Now, I want to talk to you about spoons. Here is the link to the story I am talking about, and then I will give you my example. I hope it will WOW you!

http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Here is my spoon story. I start the day out with 12 spoons. But, I only slept two hours last night. I lose one spoon already because I know I will have to plan the day that doesn't involve much energy
and much driving since I am tired. A is giving a hard time about getting on the bus and is having a
shouting match with P. I start to get a migraine already. Take away another spoon. I got K ready for
school, but she has an accident on the way out the door. Back inside, and it's a huge cleanup and re dress, etc. minus another spoon. 

Before I even leave the house, how many spoons have I lost? Three! I also have to take A to dance class after school. Minus another spoon. Oh no, there are no more frozen dinners left. I have to prep dinner after dropping K off at school and have it ready to pop in the oven after dance class. Take away two spoons because standing in the kitchen making a meal makes me very tired! Plus, tonight is bath night for the girls. Another spoon gone. After dinner, I have to put the  food in containers and try to wash some of the dishes and load the dishwasher. Take away another one. How many are left? Four! 

I still have to make A's lunch, get K's snack ready, get my clothes ready for the next day, make sure alarms are set, and maybe try to fold some laundry. Now, my spoons are gone if I did all that!

If P came home and helped with any of the night routine, I might have a spoon or two left at the end of the day. But, it's rare. If that happens, maybe I will stay up another hour and go online and watch a movie with P or call a girlfriend on the phone or my sister. Lately, I am just able to put pajamas on and go to bed.

So, what do you think about Spoons now? You've got a whole new twist!

My two positive things today- I'm blessed with two beautiful girls both special in their own way.  We've been blessed from the kindness of strangers throughout K's illness. 

I have a bunch of doctor appointments coming up, so I will update you as I get any news. 

Please feel free to leave comments, questions and I will address them in my next post.

This is a picture of the whole family last Easter. I'm in the blue dress. Since then, I've lost about 15 pounds and look pale in my face and have weird bruises on my legs. 

Till next time! Thanks for reading!

Lisa

Getting to Know Me

Hello! My name is Lisa and I'm 40 with two beautiful girls. K will be 4 and A will be 10 this month.I will talk more about how wonderful and how special they are later and post some pictures.

I have several 'invisible' illnesses that I live with every day and still take care of my children and do the usual stuff a wife and mom is supposed to do. Invisible illnesses are illnesses a person has, but they don't make the person look sick on the outside, like a physical deformity, wheelchair, cane, etc. I don't have any of those.

My first invisible illness I was diagnosed with back when I was a teenager is Chronic Fatigue Syndrome. This makes me feel tired and achy ALL of the time. I feel like I'm dragging my body around wherever I go and in whatever I do. Here is the actual definition- By Mayo Clinic staff

Chronic fatigue syndrome is a complicated disorder characterized by extreme fatigue that can't be explained by any underlying medical condition. The fatigue may worsen with physical or mental activity, but doesn't improve with rest.

The cause of chronic fatigue syndrome is unknown, although there are many theories — ranging from viral infections to psychological stress. Some experts believe chronic fatigue syndrome might be triggered by a combination of factors.

There's no single test to confirm a diagnosis of chronic fatigue syndrome. You may have to undergo a variety of medical tests to rule out other health problems that have similar symptoms. Treatment for chronic fatigue syndrome focuses on symptom relief.  http://www.mayoclinic.com/health/chronic-fatigue-syndrome/DS0039

My next invisible illness is fibromyalgia and I was diagnosed with that at the same time I was diagnosed with chronic fatigue syndrome. This makes me feel basically the same. I wake up tired and achy every day. I don't remember a day without pain or achiness.  Here is the definition- Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.

Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals. Women are much more likely to develop fibromyalgia than are men. Many people who have fibromyalgia also have tension headaches, temporomandibular joint (TMJ) disorders, irritable bowel syndrome, anxiety and depression. 

Fibromyalgia is characterized by additional pain when firm pressure is applied to specific areas of your body, called tender points. Tender point locations include:

Back of the head

Between shoulder blades

Top of shoulders

Front sides of neck

Upper chest

Outer elbows

Upper hips

Sides of hips

Inner knees

Fatigue and sleep disturbances

People  with fibromyalgia often awaken tired, even though they report sleeping for long periods of time. Sleep is frequently disrupted by pain, and many patients with fibromyalgia have other sleep disorders, such as restless legs syndrome and sleep apnea, that further worsen symptoms.

I also get chronic headaches and migraines. I was just recently in the ER for a bad migraine. I was just approved for Botox treatment and did get my first one. But, I need to wait for a couple treatments to see if they are working for me. Obviously, the first one didn't work. But, I didn't have high hopes. 

When I was 30 and pregnant with A, I was in the worst pain imaginable and I had swollen joints. I saw a rheumatologist and had a simple blood test. I was then diagnosed with rheumatoid arthritis. It isn't active now and my joints are not swollen, but I take a maintenance medication to keep it that way. 

My most recent diagnosis is colonic inertia. For almost a year, my GI diagnosed me with gastroparesis (paralyzed stomach). I had all of the symptoms. I would know since my youngest daughter had it severely. But, I just kept getting worse and the medications stopped working. Then I decided to meet with a colon surgeon. 

This is how I found out:

Here is my health update- I met with my colon surgeon today to see if he had answers, and he sure did! As soon as he walked in! He told me shockingly, right off the bat, that based on all of my tests from my GI, that I was a candidate to have my colon removed and to have an ostomy. But since I'm still young he won't do that right away.

My colon doesn't work at all! That's why I feel so sick all the time! But all this time I've even experiencing a domino effect. I've been on one pain medication for my fibromyalgia and chronic fatigue syndrome. My pain management doctor put me on it, it's worked well over the years, and he has told me I'm on a low dose so it shouldn't be affecting me like this. Now my GI and colon surgeon have told me I need to get him to wean me off of it or I will wind up needing my colon removed and the damaged will not be baled to be reversed. But it's made me more and more constipated, and then I take a nausea pill which makes that worse because the laxatives aren't working anymore and the amitiza also doesn't work anymore. 

I also have to drink more, take a fiber supplement, and exercise! So, I'm on a mission to do all of that. I need to feel better and keep my colon! 

Imagine being 40 and being told you have to get your colon removed? I'm still in shock. I'm so glad I made this appointment. 

So far the fiber supplement seems to be helping somewhat. The drinking is a no-go since I'm still so nauseous around the clock and I'm supposed to ease off of the anti nausea medication zofran.  Zofran, as per my GI may make me more constipated. So, getting all that water down somehow will have to be figured out further. 

Colonic Inertia is a subgroup of people have constipation because of disordered nerves and muscles of the colon itself. In these individuals, movement of fecal material within the colon is markedly delayed. Patients with delayed colonic action (medically termed colonic inertia) have difficulty with moving stool through the colon, which is about 3 feet in length. In patients with colonic inertia, stool may remain stored in the right or middle portion of the colon and not progress adequately to the rectosigmoid colon. It is the rectosigmoid colon that is responsible for the propulsion and transfer of stool out of the body – the processes involved in defecation.

There are a variety of conditions that may cause slowing of colonic action. Medications such as some antihypertensives, pain relievers containing opioid, antidepressants, antipsychotics, and anticholinergics may all slow colonic action. Hypothyroidism, diabetes, and some rheumatologic conditions may also decrease the function of the intrinsic nerves and muscles of the colon and produce severe constipation. Finally, there are some individuals that

develop colonic inertia without an identifiable cause. This condition is termed idiopathic. It is seen most commonly in young women.

My CI may have been caused by the low dose pain medication I've taken for the fibromyalgia. Nobody knows for sure. 

So, that's ME! In a nutshell. 

I really hope you want to get to know more about me and my Invisible diseases and how they affect my life, my family, friends. Next, I will introduce you to my family. 

In all of my pain and illness I do try to find at least two positive things to every day as my friend has taught me no matter how small they may seem. And I pray to God for cures and for relief and that I get through another day for my children. 

Please feel free to ask me any questions about any posts.

Thank you!