Thursday, December 29, 2011

Colonosco - ME!

Well Folks. I did it! I've had my first Colonoscopy..........

And I must say it wasn't that bad. I think the fear of the unknown is the scary part - but (pun intended) now that I've done it, there is nothing to be afraid of. Promise!!

The prep - although not fun, really not bad. You and your toilet are BFFs during this pre-op prep and you and your bathroom get to send some quality time together. Your bathroom does not feel neglected at all during the prep.

I chose the Dulcolax tablets and Phospho Soda/ Mag Citrate prep. It was not that bad and after reading the stories from hell of the "Go-Lightly" (sounds like that guy had a sick sense of humor - lol) I said bring it !I won't bore you with the full instruction on the prep, but suffice it to say,there is a day of clear liquids, the bowel cleanse and you drink a LOT of water and Gatorade to keep hydrated.

If I can make a few suggestions - and of course I'm trowing my TMI disclaimer out there now, it would behoove you to get the moist flushable towelettes, some good magazines, Vaseline and maybe even a few nice scented candles because you will be spending a lot of time in the potty room for the two days before the prep.

The day of the procedure, you are NPO - which means nothing by mouth or you are fasting. Small sips of water are okay but that's it. I found myself feeling really nervous and anxious the day of. I think mostly of silly things like: "will I toot during the procedure?", "will I say some unspoken subconcious thought or desire" "will I poopy on the table" "Will my butt look fat" - I mean really..... I guess I was worried about the drugs too, "Will I lose control" "feel too high" etc.. but surprisingly I was calm about the procedure itself. But once I got there - my anxiety decreased.

You must bring someone with you to drive post-op, so my huddy was my designated driver and colo buddy and for moral support. The medication they gives you actually prevents you from driving for 24hrs post procedure which I didn't know - so as an FYI, if you make plans for the day after - you cannot drive. But for the record, you are A-OK fine TO make plans the next day.

The anxiety seemed to subside a bit (not all together) once I was in the pre-op room, that or I realized I couldn't run at this point - cuz there were a few moments in the wait room where I was going to go rogue on my colo and call it a day! But once inside my vitals were good (meaning my pulse was not 220 and that of a race horse) and I felt more succumbed to the process.

They take vitals, start an IV, do the standard pre-op questions with you and then you wait. My MD came in to say hi and I told him I was terrified at which time he told me a "Butt" joke I can't remember and assured me I would be okay and then they wheel you in to "the Room".

I must say the hanging hoses were a bit daunting and looked rather LARGE from where I was laying, but everyone was so nice. They kind of show you the TV and explain the procedure, and then give you some pain meds in the IV and the fun begins. After the pain melds they introduce Versed which is an amnesiac so to speak, so it is anesthesia that allows you to not remember the procedure or any pain associated with it. Good stuff - but kinda freaky though because you really "Can't" remember! I can recall bits and pieces of talking and looking at the screen, and from what I do recall - there was no pain. In my minds eye I can see my bright and shiny colon on the screen and the MD saying something, but for the life of me I can't really remember and have no idea what I was seeing or what was being said.. Then it's just kind of "Over" and you are being wheeled into your post op recovery room.

The funny story about that is, I musta wanted to prove something because as I was being wheeled out, my husband said I was saying rather loudly "I am women - Hear me roar", which I think is pretty damn funny. I don't remember the MD talking to me after the procedure, but my husband assures me he did. I don't remember getting wheeled out to the car pick up, but my husband said I was having a gay old time and the nurse wheeling me out was my new BFF and I was telling her my life story. Nice. Also pretty funny and per my husband I asked the same question about 5 times on the way home. Gotta love Versed! lol

What I do remember is my couch, getting Burger King because I was starving and loving every last bite, watching a bit of TV and zonking out. There was NO post op pain. Some mild post op gas but no residual anything from the prep or procedure.... but all the pre-op fasting, liquid diet, bowel cleanse weight loss was put back on with that Burger King! Lol - What I do remember was asking the nurse if I could eat and her saying "Sure - you got an empty colon, you gotta fill that bad boy back up!" Also funny!'

So for all of you who are afraid - please let me assure you it is not that bad at all AND it can save your life, so get one so you don't possibly "die from embarrassment" - it's okay. I promise!!

Okay so for the moral of this story, the climax, the conclusion, the ending - The Results....drum roll!

All's good in my colon! NO SCLERODERMA in my colon!! Amen!

What I do have are Wide Mouth diverticuli

So although I do not have any Scleroderma in my colon (so no sclero scarring or hardening has taken place) the Wide Mouth Diverticuli themselves ARE a part of Scleroderma. They are a symptom and progression of the disease, but not the Scleroderma itself per se' - if that makes sense.

But as long as the scarring hasn't hit my colon yet, then I consider myself very lucky and feel very happy with the outcome and the findings. I guess in a way the Sclero "has" hit my colon - but not in the bad way I was scared about. And before going in, I knew that the Wide Mouth Divertic were a part or sclero and were possible what I have been feeling.

So WHAT ARE Wide Mouth Diverticuli?

Well the colon is made up of connective tissue and as you know, Scleroderma is a "Connective Tissue" Disease - which is why the GI tract and Colon are affected greatly. The strength, health and peristalsis of the colon wall is affected by the connective tissue - which is why we do NOT want scaring in our colon. The submucossa of the colon is composed of collagen - which is also affected by Scleroderma - so the Big S can hit us pretty much anywhere in our colon and GI tract.

Wide Mouth Diveticula are just that - wide pouches (or mouths) within the Colon, along the colon wall. The pouches can trap food or in some cases become infected and cause diverticulitis, which I am sure everyone has heard of. If the food gets trapped in these large pouches - the colon will try to do its job and get the food out, which in turn causes "cramping and pain" while the colon tries to churn or push the food out. I think this is what I have been feeling when I write about my "Koo Koo Clock" GI symptoms. I get so crampy and in so much pain during certain bowel movements that I must turn right around and throw up...after the movement is over and I rest for a bit - the episode is over and I can go about my day, but during is a big Suck Fest, It hurts and it's no fun - But now that pain has a name and it's Wide Mouth Diverticuli (makes me giggle every time). If you haven't read my blog about my GI symptoms and Koo Koo clocking - then please do. A lot more detail (and TMI) but very descriptive if you or a loved one has those symptoms.

Why and How do the Wide Pouches develop?

The main function of the large bowel is to reabsorb water and salts that have been secreted by the rest of the gut. This helps the formation of stools and helps to move the waste along. In scleroderma, there is, as is the case with the rest of the gut, weakening of the gut muscles and impaired motility. This can lead to constipation. And at times, alternating diarrhea - which weakens the bowel wall and can cause these pouches. Wide Mouth pouches are related to Scleroderma (whereas other diverticula are not large mouth and not Sclero related)

So what do I do about it? Well I continue to eat right. Exercise. Eat High Fiber. Drink 64oz of water a day with my Gatorade and live my life!! That's it. There is nothing you can do really - once you have them, they are there. I will just keep an eye out for Left Lower Quadrant pain, fever, and symptoms of Diverticulitis and I will be just fine. 

As a side note and rather ironic I think - previous to my colonoscopy, I HAD diverticulitis - and it was not fun. If you read my blog and/or know me, you know I am not a big pain med person, but boy did I become one with the diverticulitis. Once it is over and you let your gut rest, you are just fine. Its about 3 days of clear or soft liquid diet, tons of water and bed rest to let your gut rest... pretty much your "Gut" is on bed rest - you are just the vessel! lol...

So all in all - My Colonoscopy was fine. I am great. And I don't have to do that for another 10 years!!

Happy Holidays and where did the time go........................

So all I can say it WOW does time go by fast!!

I can't believe my last post was in November. Yikes!!

When the Holidays hit, it just seems like life goes by in a whirl-wind. Like the Tasmanian Devil with bows on!!  One minute its Halloween and the next day there are Christmas decorations in Walmart.

That is pretty much what happened. Albeit, crazy fast but fun. I LOVE the holidays. That is my time. Those are my people!! If there is an event or festival to be had - I am there with bells on (pun intended). I'm not wearing the Christmas Sweater Vest just yet - but give me 15 yrs and I'm your girl. I love everything about the holidays, hustle bustle included!!

Although I must say wrapping presents this year was a hoot!! Tape and Sclero hands don't mix. It was pretty funny. So I just did the bows!! lol

Ah...So where did I leave off. Oh yes - an update: I did discontinue the Effexor and I must say I feel 180% better OFF that medication than I did when I was on it. It was not a fun ride (Crazy Train) getting off the stuff but I am glad I did.

Halloween was a blast. We did the Zombie walk which was fun. I found my inner-Zombie!! Good times were had by all. Halloween itself wasn't too cold, which meant no Raynauds and not raynaud pain which is always a good thing.

November was a blur...Like I said above - one day its Halloween and the next your a "in it to win it" for the holidays... We had Thanksgiving, Band Concerts for my son, and the beginning of all the Holiday Festivals around Louisiana, Texas and Arkansas. November seemed to go off without a hitch! I did splurge on myself for Black Friday (or was it Cyber Monday?) and got myself a Lap Top, of which I am typing on now! I am finally a grown up with my own lap top!

Which leads us to December... December has been great. I mean as far as the Big S, of course the cold weather brings along its own challenges. But no real Flare ups in December thus far and I must say I am not complaining! Give me an "Amen" to that!

This December, literally every weekend there was an event having to do with Christmas, I was there. We went to Natchitoches for their Parade and Fire Works Festival which was (if I can bring this back for a minute) was "The Bomb" (okay we can put it back now). They call it the "Christmas City" which pretty much sums it up. Super cute - if you could put it in your pocket you would. We had a great time.

Then we did Marshall, Texas which is all lit up and their town square is just cute as a button belongs on the top of a cake, it's so sweet!! I'm thinking you could probably see Marshall from space there are so many lights there - which to me, just makes it all the more enchanting! It was one of my favorite Christmas memories this year!

We did Lights, Concerts, Carols, Movies, Christmas band concerts for my son at the Mall and at The Boardwalk - It was magical and amazing (to me) and I loved the whole season, but nothing came close to having my oldest son, Timothy, come out for Christmas. That was the icing on my Stacie Cake. I got to hug and cuddle my two kiddo's and beyond that - nothing else really mattered too much!!

Which brings us to today - The 29th of December. What does this Thursday bring to my table. Well I was battling some dizziness, light headed, stiff neck, sore throat, HA, and fullness since about Christmas Eve - which was kind of a bummer. I shoulda' known trouble was-a-brewin' when I got that Quasimodo cold sore that tried to take over my face, but alas - my body was letting me know it was time to put the Santa Hat away and rest the old Sclero body. So today I marched my booty to the ol' Family Practice doc and got me the good stuff. I got a Rocephen (antibiotic) shot and a Steroid Shot and I must say - Bring it! Because I am feeling a little better already. I also got the proverbial standby Z-Pack, some steroid nose spray and a Medrol Dose pack to help scare this Upper Respiratory Sinus infection away. I love the docs who go old school and break out the syringe!! It helps bring relief so much sooner. So today I continue to just take it easy. Update my blog on my big comfy ginormous couch with my son Tosh (who Santa also brought a Lap Top) and enjoy this Christmas Break from school with my kiddo. I am cocooning now and trying to just enjoy every "post-Christmas" minute until New Years!

The only thing that saddens me about the Christmas Season is how abruptly it comes to an end. Like a screeching hault. Midnight - BAM no more Christmas music, no more Christmas movies, the commercials change, the stores change and it's all about returns and post Christmas sales. It makes me sad and my heart feels a bit empty after the build up. I'd like to ease out of Christmas a little bit more.... kind of gently pass through it to New Years and enjoy what its all really about. It seems the "12 Days of Christmas" have been forgotten or people seem to think its the 12 days before Christmas and not after - so everything just goes back to status quo

I hope the Christmas Season (Holiday Season) was beautiful and amazing for all of you as well. It's a magical time.

Next Stop: New Years!! All Aboard!.....................

Friday, October 14, 2011


I'm going off the rails of the Crazy Train....... Called Effexor withdrawal!!

Man, this stuff is brutal. If anyone has ever stopped an SSRI (anti-depressant) than you know where I am coming from. It is no picnic. 

I decided to stop my medication called Effexor. It is an anti-depressant that I went on when I was diagnosed. I truly needed it then, and I think it helped. 

After my diagnosis I took a left turn to crazy town for a while. I was depressed and anxious, felt doom (especially after reading the life expectancy and prognosis for Systemic Sclerosis). Now of course I know better and have come to a place of understanding and acceptance, but as newly diagnosed and after spending time on the Internet - It's no wonder why I nutted up like a fruit cake for a while. 

It has been TWO years now, officially this October 2011 and I am feeling so much better about everything, so I decided to discontinue my medication. I have my doctors blessing and am doing everything by the book. I am (was) excited to get off the stuff as I think it added to my weight gain these past two years - and now finally getting back to full fledged work outs again - having one less thorn in my side in the war against weight sounded like a win win. 

Let me tell ya tho - As glad as I am to be finally getting off this med, these withdrawals are no joke!! I don't think I could ever be a junkie - cause coming off this stuff is brutal enough. I'm talking true withdrawals here peeps!!

It is weird stuff. I swear I feel like I am walking on marshmellows, while sticking ice picks in my temples at a Grateful Dead concert. It's a trip - and not a good one. 

Every once in a my brain gets defibrillated and I get these "Zaps". It's crazy stuff (no pun intended). I sent out a "Twitter" about it (yes..I'm a total nerd and I Twitter too!) and I got so many responses from people saying they feel it too. 

Of course I looked it up on line, and there is a lot of stuff to say about Effexor withdrawal. None good of course. Nothing life threatening or anything like that - just that it really sucks bad and they should ban the stuff! lol - Nice. Wish I knew that before! 

So of late I walk around my house in my marshmellow shoes with my Zapidy Doo Da on waiting for this crud to stop. Just gotta ride it out. 

For the record - anyone else thinking of discontinuing the stuff - there is a method to the madness so please taper down slowly. Taper down is manageable - it's just this last part when you are completely off that you wanna take the last train to Clarkesville  - Promise!

Good thing I am not a conspiracy theorists or live near a cult, cuz my brain is jello - who know's what I'd be sucseptable too (don't tell my kids) and my body feels like I just retired from the WWF. 

There is nausea, dizziness, brain zaps, fatigue, dumbness - as in I forgot where to put back the butter?, flu like feeling, aches, trippy hung over feeling and any weird thing you could possibly feel in your brain - you pretty much do. 

But - There is a light at the end of the tunnel, and that is being blessed enough of having gotten to a place where I can stop this medication. I am grateful and I am happy to have gotten to this last stop on the crazy train. 

I will of course keep everyone posted, but I am definatly taking a few days off to let my brain heal!! lol 

I am a firm believer in not hiding or making mental illness a shameful thing. I have a brother that is Bi-polar and I myself have struggled with depression off and on throughout my life. If a pill can help change the quality of your life - I say "Bring It!" - Life is a gift and there is no reason you should not try to enjoy every day you live it. For me - the time has come to stop my Effexor and see if the sun still shines bright. 

Right now, there are a few clouds during this withdrawal process - but I am sure there are clear skies ahead! Let the Sunshine In!

**Just a quick side note*** Georgia - I have not received my test results back yet from my echo, and I have not gone for my CT scan(s), EGD - Colo or PFT yet. 

Thursday, October 13, 2011

Refresher Course on The Big S

Systemic sclerosis

Symptoms and Complications:

Raynaud's Phenomenon

Raynaud's phenomenon is often the first sign of the scleroderma disease process. With this condition, small blood vessels narrow in the fingers, toes, ears, and even the nose.
Attacks of Raynaud's phenomenon can occur several times a day, and are often brought on or worsened by exposure to cold. Warmth relieves these attacks. In severe cases, attacks can develop regardless of the temperature. Severe cases may also cause open sores or damage to the skin and bones, if the circulation is cut off for too long. Stress also can trigger the syndrome.
Typically, the fingers go through three color changes:
  • First, they become very pale.
  • As the blood flow is cut off, they turn a bluish color, usually in the top two sections of the second and third fingers.
  • Finally, when blood flow returns, the fingers become red.
Tingling and pain can occur in the affected regions.

Raynaud's phenomenon
Click the icon to see an image of Raynaud's phenomenon.
Raynaud's is very common and occurs in 3 - 5% of the general population. It's important to note that more than 80% of patients with Raynaud's phenomenon do not have scleroderma, lupus, rheumatoid arthritis, or other serious illnesses. Raynaud's is more likely to be a symptom of scleroderma or some other connective tissue disease if it develops after age 30, if it is severe, and if it is accompanied by other symptoms (such as skin changes and arthritis).

Skin Changes

Course of Typical Skin Changes. The primary symptoms of scleroderma occur in the skin. They often take the following course:
  • Typically, pitted scars appear first on the hands. The skin begins to thicken and harden on the hands, feet, and face. The fingers may swell. This condition is called sclerodactylia or acrosclerosis. Patients with diffuse scleroderma may have swelling of the whole hand before the skin significantly thickens.
  • Thickened or hardened patches may also develop on other areas of the body. (Their appearance on the trunk and near the elbows or knees tends to be a sign of a more severe condition.)
  • For the first 2 or 3 years, the skin continues to thicken and feel puffy.
  • This process then stops, and can even get better. The skin may soften.
  • As the disease progresses further, however, the skin loses its ability to stretch, and becomes shiny as it tightens across the underlying bone, particularly in the fingers, toes, and around the mouth.
  • Eventually, in severe cases, the fingers may lose the ability to move, and can be difficult to bend. The hands and feet may curl from the tightness of the skin. It may be difficult to open the mouth widely.

Click the icon to see an image of sclerodactylia.
Other Skin Changes. The following skin symptoms may also occur:
  • Flat red marks, known as telangiectasis, may appear in various locations, usually the face, palms, lips, or the inside of the mouth.

Click the icon to see an image of telangiectasia.
  • In calcinosis, small white lumps form beneath the skin, sometimes oozing a white substance that looks like toothpaste. Calcinosis can lead to infections.
  • Small blood vessels at the base of the fingernails may be severely narrowed in some places, and may widen in other places. This is an indication that internal organs might be involved.
  • The entire surface of the skin may get darker over time, and contain patches of abnormally pale skin.
  • Hair loss may occur.
  • About 1% of patients have Sj√∂gren syndrome, a group of symptoms that include dry eyes and dry mucus membranes (such as those in the mouth).
  • Inside the mouth, scleroderma can also cause changes that impair gum healing.

Bone and Muscle Symptoms

Changes in bones, joints, and muscles can cause the following symptoms:
  • Mild - Severe arthritis. The condition is usually distributed equally on both sides of the body.
  • Bone loss in the fingers. The destruction is not as severe as it is in rheumatoid arthritis, although the fingers may shorten over time.
  • Trouble bending the fingers, if the disease has affected the tendons and joints.
  • Muscle weakness may occur, especially near the shoulder and hip.

Digestive Tract Symptoms and Complications

Complications in the Upper Digestive Tract.
  • Esophageal motility disorder develops when scarring in the muscles of the esophagus causes them to lose the ability to contract normally, resulting in trouble swallowing, heartburn, and gastroesophageal reflux (also known as GERD). Some experts believe that patients with severe GERD may aspirate (breathe in) tiny amounts of stomach acid, which in turn may be a major cause of lung scarring.
  • About 80% of patients also experience impaired stomach activity. A delay in stomach emptying is very common.
  • Some patients develop "watermelon stomach" (medically referred to as CAVE syndrome), in which the stomach develops red-streaked areas from widened blood vessels. This causes a slow bleeding that can lead to anemia (low red blood cell counts) over time.
  • There may be a higher risk for stomach cancer.
  • Problems with movement of the food (motility) through the intestines also develop. Patients may experience an increase in bacteria levels in their intestines as a result, and have trouble absorbing nutrients from foods through their intestines.
Complications in the Lower Digestive Tract. Complications in the lower digestive tract are uncommon. If they do occur, they can include the following:
  • Scarring can cause blockages and constipation. In rare cases, constipation can become so severe that the bowel develops holes or tears, conditions that can be life threatening.
  • Scarring can also interfere with the absorption of fats in the intestines. This can lead to an increase in the number of bacteria in the lower intestines, which can cause watery diarrhea.
  • Fecal incontinence (the inability to control bowel movements) may be more common than studies indicate, because patients are reluctant to report it.
Many patients, however, have few or even no lower gastrointestinal symptoms.

Lung Symptoms and Complications

In severe cases, the lungs may be affected, causing shortness of breath or difficulty in taking deep breaths. Shortness of breath may be a symptom of pulmonary hypertension, an uncommon but life-threatening complication of systemic scleroderma.

Respiratory system
Click the icon to see an image of the respiratory system.
Lung problems are usually the most serious complications of systemic scleroderma. They are now the leading cause of death in scleroderma patients. Two major lung conditions associated with scleroderma, pulmonary fibrosis and pulmonary hypertension, can occur either together or independently.
Interstitial Pulmonary Fibrosis. Scleroderma involving the lung causes scarring (pulmonary fibrosis). Pulmonary fibrosis occurs in about 70% of scleroderma patients, although its progression is very slow and patients have a wide range of symptoms:
  • Some patients may not experience any symptoms.
  • When pulmonary fibrosis progresses, patients develop a dry cough, shortness of breath, and reduced ability to exercise.
  • Severe pulmonary fibrosis occurs in about 16% of patients with diffuse scleroderma. About half of these patients experience the most profound changes within the first 3 years of diagnosis. In such cases, lung function worsens rapidly over that period, and then the progression slows down.
Pulmonary fibrosis also places the patient at higher risk for lung cancer. This condition may be due to severe dysfunction in the esophagus, which causes patients to aspirate tiny amounts of stomach acid.
The most important indication of future worsening in the lungs appears to be inflammation in the small airways (alveolitis). Doctors detect alveolitis by using a lung test called bronchoalveolar lavage.
Pulmonary hypertension is the narrowing of the pulmonary arteries in the lung. The narrowing of the arteries creates resistance and increases the workload of the heart. The heart becomes enlarged from pumping blood against the resistance. Some symptoms include chest pain, weakness, shortness of breath, and fatigue. The goal of treatment is to control the symptoms, although the disease usually develops into congestive heart failure.
Primary pulmonary hypertension

Pulmonary Hypertension. Pulmonary hypertension is the narrowing of the pulmonary arteries in the lung. The narrowing of the arteries creates resistance to blood flow and increases the workload of the heart. The heart becomes enlarged from pumping blood against this resistance. Some symptoms of pulmonary hypertension include shortness of breath, chest pain, weakness, and fatigue. Shortness of breath,the primary symptom of pulmonary hypertension, worsens over time. The goal of treatment is to control the symptoms, although the disease usually develops into congestive heart failure.
Pulmonary hypertension can develop in one of two ways:
  • As a complication of pulmonary fibrosis
  • As a direct outcome of the scleroderma process itself. In this case, it is most likely to develop in patients with limited scleroderma after many years.

Cor pulmonale
Click the icon to see an image of cor pulmonale.

Kidney Symptoms and Complications

Signs of kidney problems, such as increased levels of protein in the urine and mild high blood pressure (hypertension), are common in scleroderma. As with pulmonary hypertension, the degree of severity depends on whether the kidney problems are acute or chronic.
Slow Progression. The typical course of kidney involvement in scleroderma is a slow progression that may produce some damage but does not usually lead to kidney failure.
Renal Crisis. The most serious kidney complication in scleroderma is renal crisis. It is a rare event that occurs in a small number of patients with diffuse scleroderma, most often early in the course of the disease. This syndrome includes a life-threatening condition called malignant hypertension, a sudden increase in blood pressure that can cause rapid kidney failure. This condition may be fatal. However, if the condition is successfully treated, it rarely recurs.
Until recently, renal crisis was the most common cause of death in scleroderma. Aggressive treatment with drugs that lower blood pressure, particularly those known as ACE inhibitors, is proving to be successful in reducing this risk.

Heart Symptoms and Complications

Many patients with even limited scleroderma have some sort of functional heart problem, although severe complications are uncommon and occur in only about 15% of patients with diffuse scleroderma. As with other serious organ complications, they are more likely to occur within 3 years after the disease begins.
Fibrosis of the Heart. The most direct effect of scleroderma on the heart is fibrosis (scarring). It may be very mild or it can cause pain, low blood pressure, or other complications. By damaging muscle tissue, the scarring increases the risk for heart rhythm problems, problems in electrical conduction, and heart failure. The membrane around the heart can become inflamed, causing a condition called pericarditis.

Click the icon to see an image of pericarditis.
Pulmonary hypertension and hypertension associated with kidney problems in scleroderma can also affect the heart.

Other Symptoms and Complications

Other complications of scleroderma may include the following:
  • Patients with CREST may be at increased risk for biliary cirrhosis, an inflammatory autoimmune disorder of the liver.
  • Nerve damage may occur in the extremities (legs and feet, arms and fingers), causing numbness and pain. This damage can progressively worsen and lead to severe open sores (ulcerations), particularly in the hands. The feet are less often affected, but when they are, the disease tends to affect the joints and cause pain.
  • Bone loss (osteoporosis) can occur because of impaired blood flow.
  • About half of scleroderma patients develop underactive thyroid gland (hypothyroidism).

Click the icon to see an image of hypothyroidism.
  • Erectile dysfunction, usually due to scarring of the penis, may be one of the first complications of the disease in men.
  • Systemic scleroderma does not generally affect fertility in women. Pregnant women with scleroderma, however, have a slightly increased risk of premature birth and low-birth-weight babies. Although they can carry a baby to term, because complications such as kidney crisis can occur with the disease, pregnant women with scleroderma need to be monitored closely in a high-risk obstetric facility.
  • More than half of scleroderma patients are likely to experience significant depression. Researchers say it may be beneficial for scleroderma patients to be routinely screened for depression.
  • Autoimmune Diseases tend to "Group" meaning you may have more than one autoimmune condition as the immune system attacks itself; Hypothyroid, Rheumatoid Arthritis, Sjogrens, etc

Your so Vein! In your face!

Or should I say - On your face! 

Or mine at least. Telangectasia, that is. Little red spots that cause the need to wear thicker makeup. Good Bye Bare Minerals! 

What are they, other than part of the "Big S"? (Scleroderma -and Crest)

Here is a copy and pasted definition since I probably would not do it justice: 

Telangiectasias are small dilated blood vessels[1] near the surface of the skin or mucous membranes, measuring between 0.5 and 1 millimeter in diameter.[2] They can develop anywhere on the body but are commonly seen on the face around the nose, cheeks, and chin. They can also develop on the legs, specifically on the upper thigh, below the knee joint, and around the ankles. 
Why do you get them with Scleroderma? Well - no one is exactly sure - we just do, but since the Big S is a connective tissue disease that affects blood vessels - it makes sense that we would. 

Making sense does not change the fact that, well, I am vain - And I don't really want to look at them! After having a "pick fest" at my magnifying mirror the other day, I noticed that I am getting more of them recently. A few good ones on my forehead, many around my nose (which is common for anyone I think), some collections on my cheeks, although faint for now, "a change is gonna come" and they are a comin'

So, looks like my Bare Minerals Days will be coming to an end and I will be a liquid foundation - powder set kinda girl. No biggie - It's just that I finally started to like the stuff! Finally got down that ol' Kabuki Brush technique. Oh well....Wrinkles or Red Dots? Hmmmm - lol. The quandary of the vain sclero. 

Well, not really too much to post. I had a few minutes so I thought I would share about the telangectasia. I am noticing more. They are a part of the disease. I don't think I have posted about them previously - but they are part of the party, so they've been invited to the blog. 

As a side note - To honor a Beautiful friend of mine who's son also knows a thing or two about "Telangectasia" I must make mention of another Horrible, Rare, Incurable Disease that these little red pests are a part of. It is called Ataxia Telangectasia. It affects the young. It is chronic, debilitating, progressive, incurable, and sadly terminal at a young age and we must fight to find a cure for this disease too! It robs these children of so much and so young. Please visit the AT Children's Project website at: ATCP.Org 

As always - Thank you for reading and I hope if you are living with this disease, it reminds you that you are not alone. This disease is SO variable - so I try to list EVERYTHING I feel, have felt, or wonder if is related, since the websites usually only lists the common symptoms, and there is nothing more lonely than not finding yours among them. Especially when said symptom begins to change your life. I hope this helps, if not even a little. 

I will be writing a post soon about ALL of the things I have felt or had change since my diagnosis - I am going through all of my paperwork and notes as part of my yearly visits, so please watch for that as some of the stuff is never written about, yet when reaching out to other Sclero's MANY of them report feeling/having the same thing. FYI - CT chest on Monday the 17th. Echo done on Monday the 10th. Colo and EGD scheduled for Nov 2, CT abd and PFT are TBD at this point. 

Hope this finds you happy, smiling and doing well. 

Peace and Love!!

P.S. Wish we had an "Occupy Scleroderma!" 

Wednesday, October 5, 2011

GERD is the Word

Well, I finally got over my bout of the Heebie-GP's - Gastroparesis only to have a couple weeks of GI issues and the dreaded GERD flare up - Hence the reason I haven't written in a few. 

Ah the dreaded infamous ever chronic GERD us Sclero's have to deal with, like an unwanted appendage, not fun, not wanted - but there. We are all "supposed" to be on prophylactic PPI medications, but this girl was feeling pretty good for a while and went off of them and was sorely reminded why it's a good idea to listen to your doctor. This last bout of GI issues was like swallowing hot coals and getting hit with an iron skillet on a daily basis. Not Fun!

My GP finally did resolve. I was able to eat, get everything down, and was able to keep everything down so Great! Game on!! Right? Well, turns out No. I guess from the stasis (stagnant state) within my bowel, it caused some serious bacterial overgrowth, which caused some horrible gas and bloating, which led to fetal position - tush up in the air - cramps and an inability to completely empty my bowels. When I could, I had serious cramps and would "Koo Koo Clock" (if you haven't read my blog - Koo Koo clocking is what I call having an bowel movement then turning around and needing to throw up only to turn right back around again). I know - Graphic imagery - But that's the reality of it. This is Scleroderma. The Good - The Bad and The Ugly

I was also getting serious GERD. It was so bad for a while that I had that constant cough, felt the bubbles coming up which is both a. A trip and b. Pretty uncomfortable. I felt like a human 7up for a while, only not Effervescent just in pain. I had a red raw sore throat from the reflux, my tummy burned like nobodies business and I couldn't eat anything that wasn't two steps away from bland. 

I ended up seeing the GI which I was planning to anyway due to the GP bout, and because it's October and about time. He chastised me for not staying on my Omeperzole and wrote me a new RX stating that "even if I feel good" - to keep my esophagus in shape and working for the long haul, this is now a forever med. I was put on a round of Flagyl for the bacterial overgrowth and Wowzer's, can I feel a difference. My lower abdomen distension is resolving so HELLO again jeans!! I also feel less gassy and bloated. He also RX'd something for GI cramps and my BFF Carafate (which is so great I wrote an entire blog on!) Carafate coats your esophagus and tummy, like a snuggie - you feel so warm, safe and cozy after it slides down and leaves it's protective coat on your insides making you able to eat without pain and keep your insides from feeling raw. It's good stuff. If you want to try it - make sure you get the Liquid. It'll be your Tummy Buddy too. Promise. 

I also had to start my supplements again too (shhh...yes I let those go to the wayside too) and start on the Vitamin D and B12 as my labs were low again (no parietal antibodies for you medical guru's - just plain ol' malabsorption). 

So, all in all I had added about 5 new meds to the mix, back on board and ready to join the party - but I am feeling 90% better than I was, so I will take it. Bring on the Co-pay - Mama's gotta eat!! 

I am not 100% there yet. Still can feel a little GERD happening, still get the tickle cough now and them - but it is settling down. I tried eating Vinaigrette salad dressing the other day and it didn't go over so well, so I am still kinda eating bland - but that's okay because I am eating. 

Moral of the story - DO NOT stop your PPI's!! It's No Bueno..... I will keep you posted and update a little more on Friday. I am getting all of my "Yearly's" done this week (CT Chest, CT Abdomen, PFT, ECHO) so I am on Sclero Overload. I will be getting that EGD and Colo done as well, so I will keep you posted on that too. Wahoo - Lucky you! 

Bye For Now and I hope this finds everyone healthy, happy and feeling well. 

Peace and Love ~


Tuesday, September 6, 2011

I got the "Heebie GP's" - Gastroparesis that is!

So as I have written of late, I have been a tad stressed. I was finally in the groove and finished with many of the  multitude of things that go along with moving (transfer of records, car insurance, school, license, registration, checking, ohhh the list goes on) when an acute and extremely stressful event took place - and that, ladies and gentleman, is all it took. My esophagus and stomach went on strike!!

With Scleroderma - there are GI Issues, of which include esophageal dysmotility and delayed gastric emptying. These are driven from the scar tissue the Big S causes within our organs.When I was first diagnosed I had to do the dreaded motility test at the Mayo Clinic. I can say if I never have to do that again, it will be too soon (yes it was that bad. Totally traumatized! lol) But what the test revealed is the Big S has affected my GI tract. I failed 30% of my swallows and esophageal motility issues were confirmed. Those results and some of my complaints prompted the Nuclear Stomach emptying test, which as suspected, showed some delayed gastric emptying.

What were my complaints? Well I was having some trouble swallowing, although slight. I felt like things would get "stuck" in my throat at times or I would need a lot of water to help "wash things down". I also would have periods when I would feel really full very soon after eating. It would feel almost as if my stomach was pushing up. It was a very uncomfortable feeling. It almost felt as if things had quit moving and were stagnant.

Well, guess what -  that is exactly what was happening. The peristalsis of my esophagus was not as effective at pushing things down my throat and once they got down to my stomach, my stomach was as effective at digesting food and emptying it into my small intestine. This is Classic Scleroderma and no one at the Mayo Clinic was surprised by the results - but I sure was.

When this happened it was uncomfortable, but not that bad - certainly not "Disease Worthy"? But as explained to me, Scleroderma is a chronic progressive disease, and it will progress (aka get worse) over time and well, guess what folks. It has.

My first real bout with what I call TRUE Gastroparesis (which technically IS delayed gastric/stomach emptying) was after my month at the Mayo. I had just been diagnosed, had just lost my job, was adjusting to the emotional and social aspects of the disease and was going through a really rough time which caused A LOT of stress. Well, as you may be aware - stress is not good for anyone, especially those with autoimmune disease. Stress can exacerbate all of the symptoms of autoimmune disease and can (and does) cause a flare up. Stress is also not good for your GI system. I am sure we have all been there, nervous about something and get nauseous or the dreaded diarrhea... right. Been there?

Well combine the affects stress causes the autoimmune disease and top that off with the stress it causes your GI system and you have yourself a Gastric Nightmare called Gastroparesis. The physiologic How and Why stress affects the GI system is really very interesting, but I won't bore you with that - just know there is a physiological response that happens. Stress is not good for you folks!

My first bout of GP, as it is affectionately called, hit me in the face like an iron skillet. It sucked. It was so uncomfortable. I could literally only eat bites at a time and even then it would feel like it was stuck in my throat or just sitting there. My stomach felt like a ball of dough was stuck there, just fermenting. That "stuck food" in my tummy caused extreme nausea that I needed to take Zofran, an anti-emetic, to calm down. And food sitting in your tummy is no good for the lining of your tummy. It can cause erosion - which is why most of us with Scleroderma has Erosive Gastropathy - which basically means areas of erosion on our stomach linings. Well, in order to not get an ulcer and to coat my tummy I would have to take a medication called "Carafate" one half hour before I ate and a half hour after I ate to help coat my stomach and my esophagus. No spontaneous eating for me. And emotionally - that just brings more attention and pomp-n-circumstance to the whole eating ordeal. It was no fun. It was so bad that time, that I could drink water and if I bent over - the water would pour out of my esophagus like a faucet. If I bent over too early after eating, I would regurgitate undigested food. And if I burped - forgetaboutit... it would all come up. Bending over was a no-go with GP.  It was horrible, but eventually with the medication, probiotics and papaya enzymes with every meal, that bout calmed and I was okay. Did stress exacerbate that episode. Absolutely!!

And, as you have probably guessed, it caused this one too. Spending Labor Day weekend with GP was not fun. There were BBQ's to be had and drinks to partake in - which you can't do a whole lot of during a bout of GP. Pretty much I ate ice cream and Fro-yo this weekend. Good thing I LOVE ice cream and fro-yo!

GP also affects your nutrition and absorption. I had some serious vitamin deficiencies. My Vit D level was critically low, and my Calcium and electrolyte levels fluctuate enormously now with this disease, which can be serious. I have periods of malabsorption - which not only affects my vitamins, nutrients and electrolyte balance  - it also affects my medication. If I am not absorbing, digesting or moving food - then my pills are not moving or being absorbed. If my meds are sitting in my tummy and not digesting for a day, not only are they not working but I could double dose on accident if I take my next day pill and the first is still in my stomach. Another issue the GP can cause if a wide variance of your blood sugar. I can feel really shaky and hypoglycemic because all of my food is just sitting in my tummy/esophagus and not being absorbed and then once that large amount of food is finally pushed through it will cause a huge upswing of blood sugar rise and that makes you feel trippy - let me tel you. Like I said - GP is a gastric nightmare!

And one last note - someone wrote me on my Sclerodharma FB page to ask about chest pain. YES! The esophageal issues of The Big S can and does cause chest pain. It is because the food is essentially stuck or slowly moving down the food passage like thick sludge - and that can cause a referred pain to the chest. It can be pretty bad and painful at times. Mine occurs above my left breast right in the middle of my breast and shoulder. It was scary at first before we realized it was part of the GP and esophageal dysmotility. I do not have this, but I am told there can be referred pain to the back, arm and jaw as well. And I am sure, ahem.."gas" is helping cause that pain too. Non-moving fermenting food left in your tummy is a great Gas Factory and you get all the gas and bloating you could ask for during a bout of GP - which in turn causes the nausea. Yep the Big S reeks havoc on the smooth muscle of the GI system and Stress doesn't make it any better.

 Please be kind to yourself. Stress affects you with this disease. It can affect every aspect of this disease. It can cause a flare, a Raynauds attack and a serious bout of GP. Be good to yourself.

Well, I am off to EAT dinner!!  YAHOO!!  And with things looking pretty good, all of it will stay down.
Ohhh the little things in life : - )

Monday, August 29, 2011

Chicago - My Kinda Town

Well I am back from my trip to Funky Town... feeling a tad better emotionally and getting there physically. 

I am just not a good tired person, and this fatigue really does kick your a**. No Joke. I mean its an obviously "Soul" crushing fatigue (as you can gather from my last post) that can emotionally devastate you - and if you are not in the right place emotionally when it hits - Well, then you go to Funky Town for a while. It' like walking through pudding during severe cloud cover. You just want it to thin out and the clouds to lift so you can feel human again. It's not fun and I think my body was just plain beat!!

I had gone to Chi Town - my old childhood stomping grounds - with my sister and mom for a week preceding my trip to Funky Town and I think perhaps that was the last straw before I made my left turn. 

We did a lot of walking around, which was amazing. It is a very pedestrian city - which I love!! And the energy there - forgettaboutit! The city itself is a living organism full of life, so how can you not have energy when you are there!! 

Sure I limped and did my infamous "Gangsta walk" as my husband calls it when my feet and ankles call it quits and I kind of half walk, shuffle and drag myself around. But that was physical and I knew I would pay the price for walking and it was worth the price of admission. I had a great time. 

What I didn't realize is the residual fatigue that crept in like a slow fog until it was right there and enveloped me. I think my body was just tired from the trip and when I finally had the "down time" to sit and rest, my body called it quits for a while. I guess I didn't realize what the trip had taken out of me, because it didn't happen during the trip. But I think at some point your body raises the flag and then it's over. 

I am less mad at my body now, and I must admit I am actually really proud of it. Like a general of an army - my soldiers marched on during battle - and when they finally made it back to camp, they collapsed. So thank you body for allowing me an amazing trip to Chicago!! Thank you for letting me smell the smells, and walk the walk and feel the vibe and energy of the city. I loved every minute of it. 

Your white flag went up and you surrendered last week, and that's is okay. I understand and know you will be back in action and ready for battle soon. At least I do now that I am out of Funky Town and a tad more rational now - lol. 

Ah - this up and down stuff is the worst. I think it's the emotional battle we fight that is harder. Never knowing what each day will bring and then having to adjust and accept at the opening of your eyelids. But it's okay - Because life is good, even on a bad day.. and even when you are in Funky Town.

I uploaded some pics of Chicago. Love that city. Hope you enjoy!!


Wednesday, August 24, 2011

Funky Town

I dunno friends.... I'm in a funk. I feel like I'm heading toward a funk of depression. I feel so out of sorts, so tired and confused. It's been two years since I received my diagnosis and I still can't get my head around some of it. What's real? Am I really this tired or am I just lazy. Am I really this sore after activity or just out of shape. Do my joints really hurt this badly or am I hyper focused because I have a "diagnosis".... Am I really sick because I don't look it. Is it really Sclero because I have no skin hardening. Would I have even fathomed two years ago that I would need to take rest stops to clean my house.

I was a vibrant full of life young woman and lately I feel like I'm just existing. I know that's the depression, but I remember when I had energy, strived to look pretty and keep myself looking good, now I just feel tired. I used to make sure my hair was colored, get a facial now and then, work on looking my best and now I slap make up on and go thru the motions cuz I'm tired. Hell i couldn't afford a facial now anyway.... I kinda feel Like the light went out behind my eyes. Am I still in mourning for the old me and how long does it last? Is two years enough time to get over the loss of...well, yourself? 

Logically -  I'm sure my recent move isn't helping matters, nor is our financial situation (moving depleted our savings) but I thought I was handling it okay. I'm a grain of salt half full kinda girl and tend to try and see the humor in most things - so on a conscious level I don't feel it's the money that's making me blue, but betrayal? From my own body maybe? From my "energy zone" if there is such a thing - cuz mine done went on strike!

I know consciously moving and money are the two biggest stressors, blah blah blah - but I truly feel this is about the Big S and my body, which is why I am being really candid and sharing.  I feel I lost my biggest ally. Me. I sometimes don't know who this girl is. I'm sure the fact I think I'm in the middle of a flare isn't helping... So I feel guilty for being lazy - but then I question, "Is it a flare - cuz I don't know what one really is?" Is it enough to be "Flaring" if I'm so tired I could cry, my ankle joints hurt so badly I have to wear a brace to walk, all my joints ache and I feel dizzy - or is that just part of being 40? Again - Today totally admit I am having a rational conversation with an irrational self.... I just wish we were having this conversation over Starbucks while shopping for a new purse, but this girl is tired!

 No one ever talks to you about this part. They give you lab numbers, meds and charge their copayment - but no one validates the fatigue or how you'll really feel ( I know all of us spoonies and sclero's l feel different, blah) but it would be nice if the medical community would focus on our humanity a little more. Our being. Reassure us and say; "You have this disease, your world is gonna change, your going to feel so tired you want to cry some days and it's part of the disease. You are okay. You are not lazy. Your immune system is fighting a battle 24hrs a day and sometimes those soldiers get tired and need to rest, be kind to yourself and let them"

 Instead I am left with doubt, guilt, blame and wonder. I don't do well as a tired person. I have said this before... I was type A all the way, Over acheiver and on the GO! So being tired and feeling lazy is a complete mind screw for me and I must say it is a struggle for my psych. So today I admit, I feel myself slipping into depression. Even as I type my wrists hurt but is that cause I think their supposed to. Is it my convenient excuse to not do as much cuz I'm tired.... Am I just tired cuz I'm depressed? Is any of this real? Is this all in my head?   I want to FEEL alive again...I know I will, but today I am having a pity party for myself and need to just work through it, so I thought I would write about it. 

I have said this before too... Chronic disease, Scleroderma - Is a confusing and lonely place to live sometimes. There are days you feel these doubts and sadness, and I think I would like to say it is part of the disease - just like any other symptom and therefore you must accept it and move on. 

Today I took a left turn into "Funky Town". I don't plan to stay long. This is just a short visit. A pit stop in my personal journey living with this disease.  I won't say it was a "wrong" turn because I don't think there is any wrong way to "Feel". I think feeling and being present in how you feel is a good thing. So today I had a Big Dark Scleroderma cloud over my head, but tomorrow's forecast? Sunshine!!