beatingcowdens

That Voice

Published on August 11, 2013August 11, 2013 by beatingcowdens4 Comments

That voice. The one we all have. The one my friend whose post I “reblogged” wrote about yesterday,

I have been battling mine. Sometimes I win. Sometimes I don’t. But, I am actively working on increasing my stats.

Chronic illness is, well, chronic. It sticks around even when you’d like to toss it to the curb.

Yet I, as so many other parents, have found an inner strength that comes with managing your child’s chronic illness.

And somewhere after you have been battling for a bit, and your mother’s intuition is fully fine-tuned, and stronger than any fictitious “super power,” you realize it gets easier and easier to take that voice of self doubt and tell it to SHUT UP!

Just this last year alone, as I have adjusted to my new body parts, and my missing body parts, I have come to the determination that despite my gnarled mess if varicose veins- I CAN wear shorts, because – why not?

And I CAN talk to whomever I want about the Isagenix business I am working to grow, because I believe in the products, and they have changed my family for the better. So, why not?

And I CAN blog in intricate detail the stories of our battles with Cowden’s Syndrome, so that those in similar situations have a story to relate to- and others will help us raise awareness.

I am able to stifle that voice when I meet another new, clueless doctor. I am able to educate them, or fire them. Whichever is best. I am able to plow through obstacles wretchedly placed in our paths for the best care my girl deserves.

Yet, there are still times that voice, and all of its horrible, scary, evil “what ifs?” Whispers – no SHOUTS in my ear.

We are still in Disney. I am alone by the pool. I have been here for hours- not without a cocktail in hand. But I am separated from my family because my girl is exhausted.

It’s Florida. It’s August. It’s hot. And maybe it’s just that simple.

But we’ve done this before. This is our sixth time. And this time the stamina is struggling. Late mornings. Early nights. Droopy eyes. And I worry.

We give her the best, cleanest, purest food and vitamins we can find. She sees doctors all over- all the time.

And yet, “Mom I just don’t feel right.”

My heart sinks.

I brought her cookies tonight- a trip to Downtown Disney alone because she just “couldn’t.” The gratitude in her eyes worth every one of my extra steps.

There is no fever. Maybe her Dad is right. Maybe I worry too much.

But we have only seen one night show- unheard of for us. I am starting to wonder what will happen when school meets PT and swim practice!

Or, maybe I remember too much. Or maybe I know her too well.

Motherhood carries inherent risks- among them constant worry. So Cowden’s or not- I am confident I am not alone in my anxiety.

We want what’s best for them. We want to help them. They are our lives, our air, our breath.

I have got that voice in much better control than ever before. On this though, I am not alone in wondering if I will ever get it to SHUT UP!?

Sometimes When You Lose You Win

Published on August 10, 2013 by beatingcowdensLeave a comment

While we are on vacation- my friend started her own blog. She’s not a Cowden’s survivor, but a survivor of LIFE, and its many twists and turns. I have a good feeling this will be worth your time!

When You Lose You Win

Sometimes when you lose you win. ~ What Dreams May Come

I have always wanted to write a blog. I think about doing it all the time. I’ve been struggling to find the perfect subject. The conversation (with myself) goes something like this:

Maybe I’ll blog about teaching. No. Maybe infant loss? No. Hmm… Ok maybe motherhood? Nope. Health and wellness?? Maybe…

I struggle with this all the time. But that isn’t what stops me from writing. It’s that familiar voice inside my head that says the words that I don’t want to hear:

No one cares what you have to say… about ANYTHING!

So I do what most of us do. I listen. I put the idea of blogging out of my head and move on to something safe. Something in my comfort zone. Something that doesn’t involve risk. Until this week. This week something shifted inside…

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May All of this Princess’s Wishes Come True

Published on August 10, 2013August 10, 2013 by beatingcowdens3 Comments

As I rest my head tonight I hear the slow restful breathing of my husband and my beautiful 10 year old. Today we swam. Today we had her hair done at the boutique. Today we wore fancy dresses. Today we laughed and hugged and lived. Today was not about challenges that lie imminent. Today was about laughing. Today was about magic. Today was about Meghan. So when the woman waved her “pixie dust” I will confess to fighting back tears. “Bippidi Boppidi Boo! May all of this princess’s wishes come true!” Something so silly – yet with ridiculous deep meaning to us. Love my princess!

Manatees, cell phones, and hidden blessings

Published on August 8, 2013August 9, 2013 by beatingcowdens2 Comments

There was a moment yesterday when I thought seriously about dropping my cell phone into the tank with the Manatees and walking away. It had rung twice in the last 30 minutes. The first brought news that my husband (yes, the not PTEN affected one) needed to go back in for further testing of some skin issues. The second call was to put the car claim on hold. They won’t arbitrate until the field tech services the car. I do hope he brings his magic wand. This was supposed to be vacation. And a respite from the cares and worries I had left miles behind. My mother graciously agreed- again, to live at my house and care for my dogs, even though she is in dire need of a rest herself. As I felt my blood pressure escalate, I held on to my phone. I thought slowly and deeply. I turned the phone off and tossed it in my bag. We had waited too long for this… This morning I woke up early all by myself. I rode to the Magic Kingdom alone. I spdone some time readjusting my head. I rode Space Mountain alone. Haven’t been near that ride since 2000. But heck, if I can Beat Cowdens- I can do anything. So I did. And the day continued just fine as we prepared for the anxiously anticipated archery lesson. There were times when things really stunk over the last few weeks, we would talk about this archery lesson. And then, as it will often do in Florida in August- it rained. It was one of those bone soaking thunder and lightning storms that come out of nowhere at exactly the wrong time. And just like that archery was cancelled. Quite aware that I am supposed to be the grown up in such things- I did the mature thing. I cried. Tears if frustration for weather out of our control. For circumstances that couldn’t be changes, and for yet another disappointment for a child who has had way more than her fair share. But, as God so frequentdie does, He heard my desperation. Something that could seem so silly if you didn’t know the back story- yet another blow to our shaken cores. And then. The supervisor, and one if the instructors, pulled us into a back room and for 30 minutes gave Meghsn a 1:1 lesson of the basics of archery. She held the bow- just never shot it. And, maybe with that soft tissue tumor it was for the best. Grateful we headed back to meet my very dear childhood friend and her family for dinner. The conversation was light. Relaxed and fun. The kids were excellent, and we ended the night at the Main Street Electrical parade. Blessings abundant. Maybe we will appreciate them even more because we have to look extra to find them. Yet- they are always there. I decided to keep my cell phone. But now I turn it off for large parts of the day. I figure the manatees wouldn’t like Candy Crush anyway.

Rare. Invisible. Real.

Published on August 5, 2013 by beatingcowdens4 Comments

Those are the words that come to mind every time someone asks me to describe Cowden’s Syndrome.

Most people, even most doctors, understandably, have never heard of it before.

With an occurrence of 1 in 200,000 that is not a surprise.

There is always hope... — There is always hope…

What is a surprise is on days like today, where the sun shines a bit brighter. The traffic is a little lighter. Daddy is home on vacation. And, we met a doctor who had heard of Cowden’s, understands it, and is compassionate, likable, and easy to talk to. Yep, imagine that? A POSITIVE experience!! 🙂

We saw an NYU affiliated hand surgeon today. I am sure God heard the chorus of prayers storming Heaven for an answer for this kid, and today He delivered.

We were early for our appointment and waited in an uncrowded waiting room, while a pleasant receptionist organized the paperwork.

We were taken promptly at our scheduled time. We met with a friendly, competent PA. She had the hands Xrayed. The doctor was in the room 10 minutes later and immediately had Meghan on his side when he started to talk about two of her favorite things – Disney and swimming.

He examined her hand. He easily recognized the soft tissue tumor that is typical in Cowden’s Syndrome. He told her stories of another young boy he treats with a rare disease who grows bone instead of tissue. He validated her. He was confident. He drew a picture, and explained why that tumor was causing pain.

With every word he spoke her smile grew. The hope went back into her eyes. She waited anxiously for him to tell her he was going to take it out.

She almost leaped up and cheered.

August 20th in the early morning hours. my then 10 year old will prepare for her 10th surgery.

That’s how you know a kid is at her wits end. When surgery is an exciting option.

He told her it wasn’t going to be better right away. He asked if the PT from the letter we showed him (you know – the PT who had it right ALL ALONG! 🙂 could rehab her hand. I told him I was quite sure she could, but I would ask. (Actually – I have no DOUBT she can do anything. Dr. Jill NEVER gives up on Meghan!)

He said the pain may be worse for a bit after he “messes around” in there, but that gradually she will feel the pain lift and the range of motion return. I wanted to hug him.

All it takes is someone who “Gets it.”

We all want to be validated. As adults we often struggle to have our concerns made valid by those we love. When you have a rare disease, where the symptoms are often invisible, you struggle to be taken seriously. People are quick to pass judgement.

She looks fine, why can’t she walk? She must be lazy.

She is complaining again? Attention seeking,

So when you are just trying to have your voice heard, at the same time that you are trying to find your voice -life can feel extra challenging.

Cowden’s Syndrome is a struggle. We are buoyed by the fact that we have each other. I have Meghan as my inspiration, and she has me as her advocate.

I will NEVER give up. She will continue to get the care she needs. She will continue to see doctors who validate her. She will continue to inform an under informed public with her “cards.”

She is my heart and soul, my sunshine. She deserves nothing less.

We can’t change the “Rare.” The “Invisible” or the “Real.” But we can open the eyes and hearts and minds of more and more people every day. Ours is one of so many other Rare Diseases. We are grateful. We are blessed. Even through our pain we have gratitude for our blessings. And we will move forward with our mission of awareness.

Extra Parts

Published on August 4, 2013 by beatingcowdens2 Comments

We got the car back – with a few extra parts.

And this morning for an added surprise a screwdriver left on the driver’s seat poked me in the bottom!

The car isn’t fixed.

We had to take it back to wait for the “Field Tech” to have a look.

Apparently the “Tech Line” suggestions weren’t helpful, so in their infinite wisdom, they one by one took out parts, swapped them with new ones, then put the old ones back in when the problem wasn’t fixed.

10 days in service and I left with the same broken car, with the same parts as when I dropped it off.

Except that a few “extra” parts were left on my seat and my console.

While we will make an appointment some time next week to leave the car for the “Field Tech,” I had to laugh in spite of myself at the irony of the whole thing.

We have spent the summer at doctors. Some doctors were routine, some were tests and follow ups for things that were not “ok.” While there are many things that will leave me unsettled long after the summer has passed, the most disconcerting right now is the pain in the wrist and the hand.

A three hour MRI, a phone consult with the vascular surgeon, a phone consult with the rheumatologist, a local orthopedist, and a local hand surgeon – NONE of whom have a clue WHY after 8 WEEKS there is significant pain flexing the wrist, or holding a pencil, or performing any number of basic tasks.

Tomorrow we will head to the hand surgeon in Manhattan, with hopes that he can process the “extra” bump on the palm of her hand, and understand its relationship to the pain, and offer us a viable solution.

Too hopeful? Maybe. But, if I give up hope, where will we end up?

Raw with fatigue. Frustrated by “extra parts” and the people who don’t seem to know what to do with them…

Which ones do we put in? Which ones do we take out?

The similarities are almost uncanny. What are the odds that my child and my car would both have problems where the only hope of an answer lies in the “super specialist?”

“Donkey Butts!”

Published on August 2, 2013 by beatingcowdens3 Comments

I could barely contain my laughter, but by then we needed a good laugh.

We had just left the hand surgeon. The one who was hopefully going to have an answer, and get Meghan some relief from the persistent pain in her hand and wrist.

I came as usual, armed with a thick heavy binder, a recent MRI CD and reports, a list of all current doctors.

I think I knew we were in trouble when he didn’t seem to see the small mass at the base of her middle finger. You know, the one she says helps alleviate the pain when she presses on it?

He said it was “barely there.” Yes, and 2 weeks ago it wasn’t there at all.

He took an Xray. Obviously low radiation, (I hope) because no one left the room.

The bone structure is fine.

Shocker!

And he repeated to me that the MRI was fine. (YEP, I know.)

Then he asked if she had a rheumatologist.

Yep, she told me to go see a hand surgeon.

And he asked me to explain Cowden’s Syndrome.

But, at least he, 40 years older than the other doctor, had the decency to take out his iphone5 and google it.

I gave the beautifully written letter from our PT. It explained everything so clearly.

Pause… Pause… Obvious think time for the doctor.

“I don’t know what to tell you.”

EXCUSE ME?

” I am sorry I wasted your time.”

That was it. No request that we come back. No suggestion on what to do next. Pay the Copay (AGAIN!) and leave.

So when we got to the car Meghan and I were both agitated. Rightfully so. She is so frustrated. 8 weeks plus, and she doesn’t have the range of motion in her wrist. She was so angry. How is it that these medical professionals keep turning her away with no answers and still in pain?

I told her she was entitled to a fit. She is above that. She got angry for a bit, then frustrated. But I have definitely had many worse fits this summer alone.

Then, she said, “You know what Mom? They are all Donkey Butts! All these doctors that can’t fix anything, and keep wasting our time and your money- that’s what they are- DONKEY BUTTS!”

I spend a good deal of time working with her on appropriate language for a lady. But I almost had to pull over in hysterics from laughing so hard. I think she nailed it – politely and accurately.

Round three Monday 10 AM in Manhattan.

I don’t know anything about “Cowden’s Syndrome…”

Published on July 30, 2013July 30, 2013 by beatingcowdens7 Comments

After last night’s late night strep diagnosis, there was no way I could send her to Bible School this morning.

But, I had an appointment with the breast surgeon – a routine follow-up that I knew would take 5 minutes.

(That is why I had scheduled it July 16th when I was ALREADY IN the city- but last-minute doctor vacations are just one of the many inconveniences of life these days.)

I knew it would take 5 minutes – after I drove through an hour and a half of traffic, parked the car, walked a half mile, and waited to be called.

Truth be told it was lest than 5 minutes. A three-minute groping of my silicone implants and surrounding lymph nodes. The proclamation was made that everything looks “great” and I should return in 6 months. I actually was probably dressed and on my way before 5 minutes were up.

But, I HAD to go. It would have been too easy to cancel. It would have been too easy to blow it off. And what if? What if that one renegade cell… Nope, I HAD to go.

And, Meghan had to come with me. She trekked like a trooper to the main hospital to get another copy of the CD of the MRI of her hand for the orthopedist appointment at 2:30. Then, we traveled on the journey to the Clinical Cancer Center. I had to push her in the push chair today. The strep was knocking the wind out of her this morning and the hips and knees were bothering her.

It was also bothering her that people were staring at her. So it was a great opportunity to give her LOTS of really LOUD pep talks. I hope a few people overheard. Some people are really dumb. Others mean well – but for goodness sakes, don’t just stare at the child. Say “hello,” “good morning,” ANYTHING… UGH! But anyway…

And after the 5 minute appointment there was another hour in travel time back home.

Just in time to let the dogs out and run to pick up some chicken breast cold cuts for her to eat before physical therapy.

As she inhaled the chips and chicken I spoke with the therapist. I am always just so impressed by how smart she is, and how much she actually cares about Meghan. She took the time to READ about Cowden’s and to try to understand WHY and HOW the small fatty masses on her palm are affecting her. If only there were more…

Right after therapy it was off to the orthopedist looking for a few answers about the hand and the wrist.

That’s where things unraveled.

Ok. I understand it’s a rare disease. I do.

I get that with an occurrence rate of 1 in 200,000 you may not have touched on it in medical school.

But, you insisted on the paperwork completed online a full 10 days before the appointment. You could have read it, or had someone flag it.

And, I made the appointment with the doctor who had been prepped already.

Bait and switch?

The orthopedist today was amazingly young. I guess the big 4-0 is approaching fast, because I could scarcely believe he was out of medical school. Everyone seems to be looking younger and younger.

No need to remind me of what that implies. I get it.

We have seen LOTS and LOTS and LOTS of doctors. MOST would rather make something up than admit they didn’t know something, which is a problem in and of itself. Not this guy.

He examined her hand. Validated the pain. Looked at the MRI report. Declared there to be “nothing orthopedic” about her problem. And then he said,

“I don’t know ANYTHING about Cowden’s Syndrome, so you’ll have to tell me what it is and what it does.”

I almost asked him to repeat himself, but that would have just been to buy me time for my response. So, as I was gathering my bags and looking to exit as fast as I possibly could, I gave him a brief lesson on Cowden’s Syndrome.

This doctor was far younger than me.

This is the technology generation.

Step out of the room and hit google.com

The first link is this one http://ghr.nlm.nih.gov/condition/cowden-syndrome

What is Cowden syndrome?

Cowden syndrome is a disorder characterized by multiple noncancerous, tumor-like growths called hamartomas and an increased risk of developing certain cancers.

Almost everyone with Cowden syndrome develops hamartomas. These growths are most commonly found on the skin and mucous membranes (such as the lining of the mouth and nose), but they can also occur in the intestine and other parts of the body. The growth of hamartomas on the skin and mucous membranes typically becomes apparent by a person’s late twenties.

Cowden syndrome is associated with an increased risk of developing several types of cancer, particularly cancers of the breast, a gland in the lower neck called the thyroid, and the lining of the uterus (the endometrium). Other cancers that have been identified in people with Cowden syndrome include colorectal cancer, kidney cancer, and a form of skin cancer called melanoma. Compared with the general population, people with Cowden syndrome develop these cancers at younger ages, often beginning in their thirties or forties. Other diseases of the breast, thyroid, and endometrium are also common in Cowden syndrome. Additional signs and symptoms can include an enlarged head (macrocephaly) and a rare, noncancerous brain tumor called Lhermitte-Duclos disease. A small percentage of affected individuals have delayed development or intellectual disability.

The features of Cowden syndrome overlap with those of another disorder called Bannayan-Riley-Ruvalcaba syndrome. People with Bannayan-Riley-Ruvalcaba syndrome also develop hamartomas and other noncancerous tumors. Both conditions can be caused by mutations in the PTEN gene. Some people with Cowden syndrome have had relatives diagnosed with Bannayan-Riley-Ruvalcaba syndrome, and other individuals have had the characteristic features of both conditions. Based on these similarities, researchers have proposed that Cowden syndrome and Bannayan-Riley-Ruvalcaba syndrome represent a spectrum of overlapping features known as PTEN hamartoma tumor syndrome instead of two distinct conditions.

Some people have some of the characteristic features of Cowden syndrome, particularly the cancers associated with this condition, but do not meet the strict criteria for a diagnosis of Cowden syndrome. These individuals are often described as having Cowden-like syndrome.

Read more about Bannayan-Riley-Ruvalcaba syndrome.

How common is Cowden syndrome?

Although the exact prevalence of Cowden syndrome is unknown, researchers estimate that it affects about 1 in 200,000 people.

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Was that so hard? Meet me half way people.

It’s still hard for me to believe that cost me a co-pay.

Let’s see if the hand surgeon on Thursday can offer us something better.

Or maybe the rheumatologist will actually call me back.

Taking bets?

Every day is a great adventure!

But wait, there’s more!

Published on July 30, 2013 by beatingcowdens4 Comments

Sorry if I got you too excited with the title. It’s really nothing too thrilling. It’s just – there’s more. There is always more.

I held the phone all day in hopes I would get the promised call from the rheumatologist today. Really I should know better. At this point I just want to know if I can raise this child’s medication. But, we will add that to the list of conversations for tomorrow.

Tomorrow – happening in just a few minutes. My how time does fly. And my fellow insomniacs, all with minds and hearts as full as mine will appreciate the fact that we laughed today. We actually had a case of the giggles.

It started when I called about the car. The poor, fairly new car at the “Car Doctor” continues to get worse news as the days go on.

Today’s report was that they are “at a standstill.”

WHAT? A work stoppage on my 7 month old car?? REALLY?

But they have to wait for authorization before they can ORDER any more parts.

AND, they are waiting for a “Field Mechanic” to come take a look.

How this happens to a car that 7 days ago the entire shop was swearing to me was just fine is amazing,

At least they are on the same page as I am now.

Meghan and I HATE the rental. It smells, It shakes. It’s dusty.

But we laughed at the fact that the mechanics can’t seem to fix the car any better than the doctors can fix her.

Funny what can make us laugh.

We know each other really well Meghan and I. We are very “in tune” so to speak. I guess it’s a product of being together so often in so many precarious situations.

So as we walked up to swim practice again tonight she complained of pain in her neck. That was weird.

I touched it – checking for lymph nodes. Nothing obvious.

She swam the first 50 yards and looked weak. The coach motioned for me to come to the deck.

She told me Meghan said her throat was scratchy and dry and she was having trouble breathing.

Meghan told me she was GOING TO finish practice and she was FINE because she LIKES practice.

I stepped back from that level of determination. The coach agreed to let her swim if I was close by and we both watched.

She swam until 6:05 after taking 1st place in her 50 free heat during the mock race at practice (and knocking off about 8 seconds from her time a few months ago) the coach told her to go.

Only ten minutes left in practice anyway, reluctantly she agreed.

And I can swear to you as we walked up the steps to exit the pool that is where the speeding train plowed right through her.

That was it. She was talking and then all of a sudden she was telling me she was swallowing nails. She was pale.

It happens that fast. This isn’t so much the Cowden’s but the weak immune system. The IgG subclass deficiencies, the missing mannose binding lectin. From winning her heat, to flat on her butt. That fast.

So we drove home and she showered. We talked about the pros and cons of urgi care at dinner. We had the conversation more for something to talk about. We all knew she had to go.

So we even have a “regular” doctor at the urgi care, who knows enough history not to badger us with silly questions. He dove right in for the strep test. He dug into her throat and patiently watched for that second line to appear. And finally – close to the 5 minute time frame, he walked over and said to me “here it is.” Faint as anything, but it was there.

“Smart Mom, by tomorrow she would have been a mess.”

I know. I know, It’s that fast and that hard. If I wait – it gets ugly.

That’s the scoop on Strep Throat – from a family that has seen a lot of it. We thought we were rid of it when the tonsils left.

We forgot that Cowden’s patients can regrow their tonsils. So the tonsil tags forming again in the back of her throat are little disease mongers.

The first dose of antibiotic went in around 10. The second one will be tomorrow morning.

Tomorrow she was supposed to be at Bible School. Tomorrow she will accompany me in the rental to Manhattan again for my follow-up with the breast surgeon.

I hope its quick.

She has PT at 1, and the orthopedist at 2:30.

No rest for the weary. Have to check on that hand.

Tick Tock

Published on July 26, 2013July 26, 2013 by beatingcowdens4 Comments

I actually watched it happen. We were walking up the hill to swim practice last night. Then she was limping.

She handed me her bag – struggling to balance. Before I could ask what had happened…

“My hip, my groin, the whole thing!” Gesturing near her hip bone and down her outer thigh.

I looked for a bench but there was none. She wasn’t interested anyway.

“We can’t sit – I will be late for practice!” Exasperated that I would even think she should stop walking while writhing in pain.

“Um, Meg – I was thinking you shouldn’t go to practice.”

“No way! We are here. I am going, and besides- the only time I feel close to normal, like everyone else – is in the water.”

We took away soccer.

We took away dance.

We can’t take away swimming.

So I made sure she asked her coach to help her stretch the hip. She stopped only once during the hour and fifteen minutes. I am sure I could not have kept up.

As I walked, and she limped back to the car she said it was, “not so bad.” And, she was “glad” she practiced.

Dedication. Admirable. Torture.

After the shower it all fell apart quickly. She froze almost completely. We rubbed it, and elevated it. Within an hour she needed help walking.

She got settled into our bed and tried to rub her hip.

The yelp indicated the pain on her hand and wrist has not subsided either.

As we got her comfortable I thought forward, about the week to come.

I emailed her genetecist and her oncologist this week. I attached photos of her hand. I attached the copies of the MRI report. They responded inside of a few hours.

Biopsy those lesions. On this they agreed. Cowden’s Syndrome -PTEN Hamartoma Tumor Syndrome. Soft tissue tumors are common. The oncologist reminded me only one lesion was visible during her exam just 2 weeks ago.

I know. I watched the other one pop out as she cried out in pain during a shopping trip to Kohl’s. It wasn’t there. Then it was. Now it is. And it hurts too.

Tuesday we will see an orthopedist. Thursday we will see a hand surgeon. Two more doctors we didn’t plan for. Two more afternoons lost waiting. Two more opinions to contend with.

And the prevailing uncertainty that anyone will ever fix the problem.

She is walking a bit better tonight. That is encouraging. A nice afternoon with a friend. Conversation for me was easy and comfortable. Grown up talk – something I have craved, while the children swam in the pool. Almost normal for a few hours there. Almost.

The car is going to stay in the “car doctor” over the weekend. Apparently its condition has been downgraded.

Paperwork to begin a complaint with Better Business Bureau should arrive early next week.

Maybe I should give the CAR an ISAGENIX shake or meal bar. It might be more productive than what is being done to it.

Monday we should know more.

Monday we should also hear from the rheumatologist about her thoughts on the MRI.

Sandwiched in between concerns about family and friends alike. In some ways our lives are miles different. In more ways – they are exactly alike.

Patience. Worry. Anxiety.

Tick Tock, Tick Tock… that would be the sound of summer passing us by….

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