P.O.T.S. and Plans

Friday, November 28, 2014

Free GIft Card

Rare Patient Voice is helping patients to be heard. If you have a rare disease fill out the form at this link. Please add Mary Prado as the referral---My email is maryjoprado at comcast dot net. 

They will send you a gift card for signing up and they will also pay for your input in the future. It takes about a week to receive your first gift card. 

We need to get the word about about POTS, Gastroparesis, mast cell and EDS. Maybe if we make enough noise researchers will take heed and begin to do more research so we can find a cure.

Thank you.

Tuesday, October 28, 2014

The Road Is Long....

I haven't posted in some time. I've been overwhelmed in dealing with my daughter's illness. In case you are new to my blog my daughter and I both have POTS. But we also have other illnesses related and unrelated to POTS.

Fran has really been struggling for 7 years now. She has POTS,Ehlers Danlos Syndrome (EDS),
Gastroparesis,Mast Cell Disorder and other things we are still trying to figure out. She recently had an MRI and tomorrow she will go for a CT scan. They discovered a 2mm low lying cerebellar tonsil. So we may be looking at chiari too. It's been one thing after another and it's caused a great deal of stress, questioning God and sadness.

This disease has robbed my daughter of her childhood. She wasn't able to attend school or go to college. We spend every day running for appts. and it's been non-stop. Maybe it's the same for you. I don't have answers nor do I claim to. I just tell what works for us. God is my only strength and I pray every day that he helps us to get through this difficult time. I also pray for Fran's healing. 

The road with these illnesses are long and very difficult. We have to stay strong and keep moving forward. Don't give up. You know your body better than anyone. If you don't feel comfortable with a doctor find a new one. They don't know everything as I'm sure many of you are finding out.

Thursday, July 17, 2014

Allergic To Everything

I don't know if it is related to POTS or the EDS or both but my daughter has been super allergic to EVERYTHING. It's almost as if her body is attacking itself. She is extremely sensitive to smells. I'm talking about something as simple as a salad. These smells throw her into a POTS attack where she feels as if she will faint and gets very symptomatic to the point that she gets physically ill. 

We have to use detergents that have no perfumes in them. We cannot use perfumes or household chemicals that smell because they all contain chemicals and cause her to become symptomatic. Even the smell of foods cooking can trigger an attack. The latest problem has been an allergy to pads. 

We tried every brand and none worked. I had to end up making pads to get her through the cycle because every brand we tried caused swelling and a rash...more problems. We did just find a brand at Whole Foods but she hasn't had the chance to try them yet. I will post a review after she uses them. These claim to have no perfumes or chemicals in them and they aren't bleached either so I will post a review after this month.

Here is the link to the "how to make them". It's really getting frustrating as it feels like there is one problem after another. Do you ever feel like your body is turning on you?? Do you also have one problem after another? I wish I had answers and could help my daughter.

Tuesday, July 8, 2014

Family Support

When this blog began it was strictly about POTS and the issues surrounding it. However as time goes went on (and my daughter was diagnosed with POTS as well) the blog has kind of evolved. As more problems continue to arise the blog has expanded to cover also issues with POTS, Gastropareis and EDS too. 

My daughter was diagnosed with OI, Ehlers Danlos Syndrome, Gastroparesis and now the latest--possibly Mast Cell. We go for to NIH next week for testing, hopefully a diagnosis ---and HELP.

Fran's body has turned on her. She's been having big issues with smells. Thank God everything else is calmer and the biggest thing--- her head pain is FINALLY under control. That in itself was a total nightmare! I never want to revisit those 15 months---and I'm sure Fran doesn't want to either.

I know many if you have issues with getting support from family. Our family is very small and we don't get the best of support. Fran's been sick since 2007 and I can honestly say she's never even gotten a get well card in the mail from family not even a visit at the hospital. Last year was the hardest year of our lives and there were times I didn't even know if she'd make it through. It would have been nice to know we had support. I have discovered that "if it's out of sight---then it's out of mind". Others are so wrapped up in their own lives that they aren't worried about yours. People who don't have illnesses to worry about don't realize what you are going through and they certainly don't even think to say, "Are you okay?" 

I was so close to the edge of an emotional break down last year. I couldn't even talk about Fran without crying. I think people just didn't want to hear our problems. If they heard it---it made it real. If we didn't talk about it then it wasn't happening---at least to them. 

I've never told my family how I feel completely. However, I did tell them that I feel very alone at times. So, I think it's important to tell those around you how you feel and what you need from them as well. Will you get support? I don't know but at least it will make you feel better to get it off your chest.

It's difficult enough when you are ill. Imagine dealing with this problem 24/7. Imagine that it has no end. Imagine that you are sick endlessly and feel hopeless about the future. It's an uphill battle at times...and it would be nice to know someone...anyone cares. 

This illness IS very real and it's not in the head. No one is making these issues up or better yet---no one wants to be sick. (I'm sure these words sound very familiar!) I know we have all heard them. 

If you have a family member suffering from this illness here are some little things you can do to show support-- 

  • Telephone 
  • Send a note
  • Get a balloon from the dollar store
  • Give a card or a handwritten letter
  • Offer to pick up something at the store
  • Maybe offer to clean or babysit if they have a child
  • Offer to help in anyway you can
  • Help with chores or shopping
  • Make a meal
  • Take to an appointment
  • Ask if they need anything
  • Lend an ear or shoulder to cry on
  • Just be there
  • Listen to the person and believe them
I know I probably forgot something but over the years since I was diagnosed it's been difficult. I've fought this illness alone and no one ever asks if I'm okay or need anything. Since my daughter got sick in 2007 I haven't even been able to think about myself or how rough I feel and not once has anyone asked if we needed anything. So...if you have someone who is chronically ill whether it's with POTS, EDS, Gastroparesis, or ANY chronic illness just let the person know they aren't alone. It's a very lonely time and sometimes this illness makes us feel so alone and small. 

Tuesday, June 24, 2014

Smell Sensitivites

Smells still play havoc in my daughter's life. In hearing from other POT'S patients this seems to be a huge problem for many.

Today my daughter was tested for mastocytosis. I haven't read up on it as I don't want to get ahead of myelf and will wait to see the final results from the blood work. She has been tested twice before but this doctor did things a bit differently. He took her off of Zrytec and Prilosec. So we will see if this makes a difference.

My daughter has been getting very POTSY and having near fainting issues every time she encounters smells. Simple things such as lettuce, cucumbers, peppers, perfume, steak cooking, taco smells etc... She can't even wear sanitary napkins when she gets her period. I have to use detergents, softeners, shampoo, dryer sheets all without perfumes. Recently I caused a big problem when I switched from Scott tissue to Northern.

I'm still trying to get at the root of this issue. It's been extremely frustrating. Smells are EVERYWHERE. What am I supopsed to do put her in a bubble?

Sunday, June 22, 2014

A Year Later: No Head Pain

It's been ten months since my daughter's ordeal with severe excruciating head pain. For those of you who aren't aware she suffered debilitating head pain for about a year and a half. Doctors said they didn't know, some said it was migraines and others said it was in her head. The pain would get so severe that it literally threw her to her knees screaming in pain. She also had bionic hearing during this time so she really suffered during this time.

I still get very emotional to this day when I she where she was and where she is now. It took many tests, brain scans, three neurologists and 15 months of needless pain and suffering to figure out the pain was being caused by Tramadol.

She had been taking Tramadol three times a day and she paid the price dearly. I'm happy to say however that I weaned her off the Tramadol. She takes only Aleeve and we have stopped all migraine meds including over the counter meds like B2 and Feverfew.

Follow your gut. I was told to stay off the Internet, let them do their job and stop looking for answers. If you aren't getting answers or the help you need and you or your child are suffering then follow your instincts. Don't give up. We must advocate for ourselves and our children. Doctors do not know everything.

Friday, June 20, 2014

Gastroparesis and Botox

My daughter's been suffering with reflux, severe chest pains and gastroparesis for almost 2 years. No one had answers and we were shuffled from doctor to doctor. My daughter lost about 30 pounds from vomiting. Doctor's didn't rush to do anything for her because she was on the thick side. I questioned them often about the lack of nutrients and her diet.

One time the doctor made some lame wise crack about her needing to lose weight. He had no idea what she was going through and wasn't listening to what we were telling him either. I insisted on a referral to a GI doctor. This new GI diagnosed Fran with gastroparesis. He saw Fran for several months but when he couldn't help her he sent her to a motility doctor.

Dr. Ellen Stein is a life saver. She saw the desperate state my daughter was in and came up with a solution. She did an endoscopy and injected Botox into my daughter's stomach. We saw the results almost instantly but it was short lived. (It lasted nearly 3 months.) Two weeks ago my daughter had a repeat endoscopy and the surgeon did double Botox injections. So far so good...Fran is still getting sick and still learning what she can eat. It's been allot of trial and error.

Botox has given her stomach a break. It has enabled her to eat. She still has some pain and it's difficult to know when she is hungry due to the Botox. However Botox and Dr. Stein has given Fran her life back. It took us a long time to find the right doctor. Find a compassionate and understanding doctor who will LISTEN and do something.