Skating Sisters Large Insulated Beverage Bottle Vintage Christmas Gramma's Vintage Art

Skating Sisters Large Insulated Beverage Bottle Vintage Christmas Gramma's Vintage Art

Sarcoidosis Fighter 2.25' Button (10 Pack) Sarcoidosis Awareness Gramma's Vintage Art

Sarcoidosis Fighter 2.25' Button (10 Pack) Sarcoidosis Awareness Gramma's Vintage Art

Sarcoidosis Messenger Bag Gramma's Vintage Art

Sarcoidosis Messenger Bag Gramma's Vintage Art

Still Surviving

1. This battle with Sarcoidosis is still going. It has now been over four years since I was first diagnosed with this disease. I underwent lung surgery to remove lung nodules that were biopsied. It has been a real every day struggle with shortness of breath, coughing, peripheral neuropathy, and numerous other ailments. I have been on about 10 medications, including Prednisone and Methotrexate. Am I any better? I don't feel any better. I decided that I was sick and tired of being sick and tired! Every week after I take my meds I end up in bed which is boring. That's why I decided to start coloring. It's a great stress reliever and it's a great way to be creative. I use all public domain images and then change them to black and white images which I color with colored pencils and gel pens. Since I am disabled, I have a very limited income but mountains of medical expenses. I  opened a shop online to sell products using my images. Check out my link. I have some Sarcoidosis awareness items as well as other.http://www.cafepress.com/sarcfighters.1636963047http://www.cafepress.com/sarcfighters.1636963047

Sarcoidosis Awareness Month

Complications

By Mayo Clinic staff In about two-thirds of people with sarcoidosis, the condition resolves with no lasting consequences. But in some people, sarcoidosis can become chronic and lead to complications that may affect different parts of your body, such as your:

• Lungs. Untreated pulmonary sarcoidosis can lead to irreversible damage to the tissue between the air sacs in your lungs, making it difficult to breathe.
• Eyes. Inflammation can affect almost any part of your eye and can eventually cause blindness. Sarcoidosis can also cause cataracts and glaucoma. However, this is rare.
• Kidneys. Sarcoidosis can affect how your body handles calcium and this can result in kidney failure.
• Heart. Granulomas within your heart can interfere with the electrical signals that drive your heartbeat, which can cause abnormal heart rhythms and even death. This occurs very rarely.
• Nervous system. A small percentage of people with sarcoidosis develop problems related to the central nervous system when granulomas form in the brain and spinal cord. Inflammation in the facial nerves can cause facial paralysis.
• Reproductive system. In men, sarcoidosis can affect the testes and possibly cause infertility. Women with sarcoidosis may find it more difficult to conceive, and their signs and symptoms may worsen after delivery.

My ABC Illness

I guess I have way too much time on my hands since I spend a lot of my time at home taking a bagful of meds everyday to try to combat all of the many issues going on in my body. Doctors are somewhat baffled. Is Sarcoidosis to blame for all of these symptoms or is there something else going on concurrently? This question has been raised over and over for the past year without any concrete answers and without any real treatment plan that works! My doctor is frustrated as much as I am. Anyway....here it is....my ABC's of my illness:

A: Anxiety, Arrhythmia
B: Bone Pain 
C: Cataracts, Chills, Chronic Pain
D: Dry Eyes, Dry Mouth, Depression
E: Enzymes Up And Down (Liver)
F: Fatigue, Fibromyalgia
G: GERD
H: Hair Loss, Hives,( Rashes)
I: Insomnia
J: Joint Pain
K: "King-size" Ankles
L: Lung and Lymph Node Sarcoidosis
M: Migraines, Muscle Cramps
N: Night sweats, Nausea
O: Ongoing Bowel Issues
P: Peripheral Neuropathy
Q: Queen of Daily Headaches
R: Raynaud's Syndrome
S: Scoliosis
T: Twitching Muscles
U: Ulnar Nerve Damage
V: Visual Disturbances
W: Weak Muscles
X:  X-Ray Abnormalities (Pet Scan...lots of lymph nodes lit up)
Y: Yearning To Have One Pain Free Day
Z: Zero Tolerance For Bright Lights

An Upside To Everything

When I was first diagnosed with Sarcoidosis I had never even heard of this disease! Since then I have researched day after day to find out as much as possible about it and about treatment options. I also have met some wonderful people who have become like a second family to me. They are my Sarc family. They also suffer from Sarcoidosis and most are alone in their community as I am. The latest thing I am dealing with is hair loss. I have to admit...I am not thrilled about this! No one told me that Sarc could do this and none of my medications listed hair loss as a side effect! After doing some research on my own, I discovered that not only can Sarcoidosis cause hair loss in some people, but at least four of my medications also cause hair loss. I have to say that when my hair began falling out I was a bit upset and shocked to see a clump of my hair loosely falling from my scalp! Day after day more and more hair continues to fall. I have now purchased a wig. This is definitely something I never thought I would do! Anyway, I was thinking this morning that there is always an upside to everything! There really is... you see, I won't have to mess around with my curling iron for an hour every day anymore. I get so tired of plucking my eyebrows! That will no longer be a morning ritual as I lose those. I suppose I won't have to worry about unwanted facial hair either and that is really an upside! This wig thing could really become quite fun actually. I could have  bunch of different ones...different styles, different colors...why a new me any time I please! No more being down in the dumps over hair loss for me! I choose to look on the upside of this.

Rare Disease Awareness Day

In two more days...February 29th,2012, people all over the world who have a rare disease will be acknowledging this day as Rare Disease Awareness Day. There are events scheduled all over the globe to bring the public into a better understanding of these rare diseases. One of these diseases that actually does make the "rare disease" list is the one which I have.....Sarcoidosis. I have read a lot of literature about this disease since being diagnosed and I can tell you firsthand that much of it is either outdated or just not accurate. I also, since being diagnosed have joined up with other people worldwide who also have this disease. We have many symptoms in common that affect our entire body, yet the medical profession is still looking at this disease as a "lung" disease  and instantly gives every Sarcoidosis patient a Pulmonologist and a bagful of Prednisone. Perhaps that works for the mild cases, however I know firsthand that just because the lung symptoms improve doesn't mean you are better. Sarcoidosis affects the immune system and the entire body. I know from talking with others online that I am not alone in my pain ...besides the lung symptoms, this is what Sarcoidosis is REALLY like.....Chronic fatigue, joint pain, bone pain, daily headaches,tingling and numbness in hands and feet,strange skin rashes, muscle cramps, blurred vision, burning and itchy eyes, cataracts, hair loss, chronic cough, chest pains, kidney problems, heart problems, liver problems...and it goes on and on. I think it is time for the medical profession to wake up and realize this is a multi system disease! Stop treating it as if it only affects one part of the body when it affects the entire system! There needs to be so much more research as to which medication actually works to help the immune system and slow down the progression of the granulomas which this disease produces in the lymph nodes and organs. Sarcoidosis patients like any other patient with a chronic illness, get discouraged and lose hope because their doctors just don't know what to do to help them. If you know someone that has Sarcoidosis ...offer support at least emotionally so they don't feel as if they are fighting this alone.

The Sarc Saga Survives

This saga of Sarcoidosis just keeps on and on. It is a tough cookie and just keeps surviving no matter what... it rears its ugly head in numerous ways to try and show who is boss. What this monster of a disease hasn't quite figured out yet ... is that this chick that it decided to mess with is a stubborn fighter! All of the many trials and problems I have been through in my lifetime have prepared me for this new battle! The Prednisone that I have been on for the last six months has really not made any difference in my symptoms for the better. Instead I have been having more issues than ever before while taking it. My headaches are now a daily occurrence, bone and joint pain are constant, extreme fatigue, insomnia, and on and on the list goes. The latest discovery,  is that I have developed cataracts in both of my eyes. This has come fairly quickly since I had an eye exam last March and there was no signs of anything wrong other than my nearsightedness. I suspect that the Prednisone has caused this not so welcomed side effect. This next week I will be going to see a new specialist at a University medical center. I am hoping for some answers and hope they can come up with a treatment that will actually do more good than harm.

My Christmas Present

I said the other day that what I wanted for Christmas was hope for treatment and a doctor who knows about this dreadful disease, Well, I was driving along in my car a couple of days ago minding my own business when I received a phone call from a University medical center that told me they had received a referral from my primary care physician for me to be seen by a Multi-system Sarcoidosis specialist. I almost dropped the phone. After all I had just been to my primary care doc a few days prior when we had discussed her possibly researching for a specialist but I honestly didn't expect any results this soon. It will be quite a distance for me to go, in another state, but well worth the drive since this specialist deals with every aspect of Sarcoidosis. I have my appointment so this is a nice pleasant Christmas present for me.... a possible hope for the proper treatment ... or at least a step in the right direction.

Hope For Treatment

I was doing some thinking this week after someone asked me what it was that I wanted for Christmas. I really don't want anything that money can buy this year. What I want more than anything is for my doctors to find some kind of medical treatments that will actually work on this terrible disease that is rapidly changing my body. I have been sick for a long while however the past year has really taken a toll. The last few months there have been some major changes as well. For one, my hair is beginning to fall out and I am starting to shop for a wig... something I never thought I would need to do. My eyes are now being affected by the Sarcoidosis as well with burning and itching and blurred vision constantly in spite of new glasses. My legs have had a lot more numbness and weakness and it makes me wonder if I will lose the ability to use them at some point. I now have the skin involvement that comes with this disease... not as traumatic as some, but weird purple dots all over  are not normal everyday  buddies that you welcome. My headaches have become an everyday occurrence and on a day that I do not happen to have a migraine I am indeed a happy camper. The frustrating thing to me is sitting in my doctor's office and hearing that he or she is baffled as to how to treat me. I am not alone. There are many people with this dreadful disease all over the world in the same dilemma. Tons of multi system symptoms and very few Sarcoidosis specialists. Yes, there are Pulmonologists who deal with Sarcoidosis of the lungs.... however, for quite a number of us who are dealing with more than just the lungs, it is complex and we need specialists who know how Sarcoidosis affects each organ. So, this Christmas as I sit here... I wish for treatment... I wish for more research... I wish for the medical profession to train for this specialty. I wish for all of my Sarcoidosis friends to not give up... it is easy to feel like it at times. One day at a time is all we have. Cherish each day and the ones you love, and keep hoping for treatment that works.

It Touches So Many....

This disease touches so many ... and of course for many of us who have Sarcoidosis, we knew we were sick way before our doctors even acknowledged that we had this. It is a very frustrating disease to have since the medical profession at this point is still researching and discovering ways to help us as we convey to them all of our many issues, and there are always new ones! Please watch this video... many of us with this disease participated in The Thanksgiving Project.

That Time Again

Wow.. this month flew by so fast for me. My doctor visits are now one month apart and today I am due for another. I do not look forward to it as I was supposed to call or go to the Emergency Room in the case that my every day chronic pain decided to increase in intensity and it has but I just have had too much to do if you know what I mean. I do not want to spend my time waiting around an emergency department especially one in which the people on staff pretty much have no clue as to what Sarcoidosis is. They seem to think it is only in the lungs when I know from the way my whole entire body is responding that it is a system wide disease! Oh well I won't start my rantings and ravings about the lack of research and the antiquated literature out there floating around. I hope my afternoon is not a total waste of time as I sit once again in a clinic and try to explain my pain and explain that "no" I do not "feel" any better in spite of what their books tell them I should be feeling on the Prednisone.

Is It REALLY That Bad?

I have been quite amused as I have watched people's reactions whenever I have told them I have Sarcoidosis. Most people have never even heard of this dreadful disease and the minority that have are still pretty ignorant concerning the facts. The fact of the matter is.... if you are like me and actually have this, then you know that you feel lousy ninety percent of your time! Yes, I get up get dressed and try to smile and get out of the house and try to function normally but for the most part it is a major struggle! There are more days than not that I would just like to stay in bed but fear if I do I would never get out. Most of us with this autoimmune disease have other health issues as well. For me it isn't simple.... I am struggling with Fibromyalgia, Migraines, Lymph node and Lung Sarcoidosis, Osteoporosis, Degenerative Discs in my neck, and on and on the list is growing! I am now taking seven prescriptions for all of these different problems. The last few weeks my liver and pancreas enzymes have been a bit elevated so probably due to my meds but who really knows? I say all of this to say that yes... Sarcoidosis needs to be added to Social Security's list of disabling diseases! If you could not go to work with the flu every day then don't expect us with this disease to either! Pretty much this disease along with the side effects of all of the meds and the Fibromyalgia thrown in there with it makes you feel that way. Some days are easier to fake than others and people look at us as if we are fine,but overall, Sarcoidosis and Fibromyalgia together are NOT a welcomed combination.

Ongoing Sarc Saga

It's an ongoing Sarc Saga! I apologize for not keeping up on my writing lately, but my meds have really been kicking my rear! My lungs seem to be breathing a bit easier, but of course I feel like garbage in spite of that, due to the other issues I guess with my liver, pancreas, lymph nodes, and not to mention aches and pains of the ongoing day to day problems with the Fibromyalgia. I am struggling this past week with my emotions being all over the place and find it very hard to be around anyone. People don't understand if you are emotional of course. They automatically just think you are depressed or crazy or whatever they want to think, I guess; but the fact of the matter is, that prednisone really does mess with your emotions, and as you taper it down you experience some withdrawal symptoms. It seems to be improving as it gets lower, thankfully, and I will be glad to be down to the lowest possible dosage for maintenance. I really would like to not take any meds at all but at this point that seems a bit impractical. The only down side of tapering off the prednisone is that the joint and muscle pain returns with a vengeance. One more day, one more week, but I am still here and for that I am thankful and I will continue to do what I can, where I can, when I can.

Week SIX...NEED A FIX

Here I am ... week six of the Prednisone and I have had two doc visits this week to evaluate how I am doing on this treatment for the Sarcoidosis in my lung and lymph nodes. As for the rest of my bod... who really knows what is going on? Anyway, I had a pulmonary function test and this actually was the best one I have had so far since April, and believe me... I have had plenty of them which ..I am not fond of. Anyway.. the Prednisone must be doing it's job since my lungs are clear for now and the coughing has pretty much slowed down, but of course I am no longer in the house that was built in 1912! I suppose that in itself has a bit to do with it. Lab work was done and the down side is that now that my lung is doing somewhat better, my liver and pancreas are actually worse than they were. Whether this is due to the meds or just due to my illness is another matter of research for the docs I guess, and as far as they are concerned I am going to be a constant visitor in their offices at least once a month for each specialist, if not more frequent than that. In the meantime, in order for me to start sleeping at night, my dosage has been changed and rearranged so now I need to readjust myself to this new arrangement of drug induced stupor for this week!

Week Five... Still Alive....

Yep..I'm still alive and kicking... sorry to all those who were hoping for my demise, but I am still around. It has been a busy couple of weeks, as I have been moving into my place near the hospital. My prednisone seems to be adjusting to my body, or is it the other way around?  Anyway... I sit here at 4 in the morning, wide awake writing, because once I wake up I just can't get back to sleep... another side effect, I guess. The quietness and stillness of this place has an amazingly calming effect on my nerves... a very welcomed thing. I am thinking positively, that as I continue to make some changes in my life that I will actually get better. I am learning to let go of the stressful people and drama and let them stew in their own juice so to speak. I need to now concentrate on me for a change and on the good things God has in store for me. So ... week five... still alive... and so thankful for all that God is doing.

Three Potatoe, Four!

This begins week four of the Prednisone treatments. How do I feel? Let me count the ways..... yuck.. yuck yuck....New symptoms seem to arise each new day .. one is a new batch of teenage style acne all over my fifty- one year old face... this is not cute! This is not amusing! This is just annoying! Along with this acne is a nice yellowish tint! I look sick now! Along with this my hair is beginning to fall out and the pain up under my right rib cage is intensifying so I would guess, the liver? Who knows.... but I have not been coughing so much since I have been sleeping in my new place. The air is a bit cleaner without animals in it. I am downright pooped to the max from packing, unpacking, organizing, decorating, and nailing and up and down a step stool constantly for the past week. I push myself because I cannot stand to live in a house with boxes everywhere so I unpack as I bring them in. Anyway... I am just sitting here ready to collapse after having spent the whole day packing more things at the old homestead to take back to the new one.  I will be very glad when I am all finished and can just lay down on my new bed and take a beauty rest for a whole day undisturbed!

Week Three...Lucky Me

It is now week number three for me on Prednisone. The coughing is the only thing that has improved. I guess I am thankful for that, however small an improvement it is. Otherwise, I am feeling pretty lousy overall. The lungs are aching with pretty much every breath and this causes an overall fatigue. Supposedly, the pred was going to also help with my chronic headaches but all I notice is that I have had one pretty constantly since beginning this.... so I guess that theory is for the birds. I am not sure if it is swollen lymph nodes choking me, or what?, but my broncial tube aches and feels weird... can't quite describe to you the feeling...but it isn't a pleasant one. A strange achiness under my ribcage is driving me nuts as well. I am trying to stay busy so I will not think on all of this but all I feel like doing is going back to bed and sleeping the day away....not good when I really need to get my rear in gear here and get so many things done. I am glad at least I can give my emotional strains to someone other than myself to carry ..... for today I just don't have the strength or energy to give a care... so, "Thank  you God for taking my cares upon you for one more day."

Sleep MY Pretty!

Awww.. Nothing like sleep! The past few days I have been so wiped out and this prednisone is really adding a new dimension to my many symptoms. It is usually not in the cards for me to lay down and take a nap in the day time...just doesn't happen around here. Yesterday however, I just couldn't function past two in the afternoon... the eyelids were heavy and the muscles were aching and the head was pounding. The sweet little dog was outdoors in her yard and the kitties were curled up for their afternoon nap in the sun as well. The house was quiet ....opportunity at last! OH those sweet little Tizanidine pills are good when the muscles are stiff ...my head went down on the pillow and before I knew it...I had slept several hours. It felt so good and then a few short hours later, I returned to bed once again and I actually slept the whole night through! This morning I was thinking about Dorothy going through the poppy field and getting so sleepy and the witch saying to her through the crystal ball..."Sleep...My Pretty...Sleep".  Yes.. I know you think I am a nut ... that's OK.  I laugh at myself too. But I am so glad for sleep last night. Now maybe today I can actually function. This will be one of those days I will try to make it to town.. This will be one of those days people will see me and say..."You don't look sick to me!" Yeah... cuz they didn't see me the last two... Oh well... I don't really want to scare anyone by having them see me that way ...so when I do feel that way... to my bedroom I flee!