Saturday, December 24, 2011

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.

Sunday, December 18, 2011

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.

Saturday, December 3, 2011

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. video

Friday, November 18, 2011

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.

Monday, November 7, 2011

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.

Sunday, October 30, 2011

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.

Thursday, October 13, 2011

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!

Monday, October 3, 2011

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.

Saturday, September 24, 2011

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!

Monday, September 19, 2011

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."

Saturday, September 17, 2011

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! 

Thursday, September 15, 2011

So Not Ready...

UGh! It's chilly this morning and I am so not ready for this... It is when the weather turns cooler that my bones and muscles really go into the aching mode and this is when I really need that Tizanidine to relax the stiffness. I looked out and actually saw frost upon the top of my Vibe this morning! NO No NO.... it is still only September.... am I right? I am not sure of the exact temp outside but it must be cold because even as I am thinking on this my furnace just kicked on... OH GREAT~ It will be another long cold winter here in the Northwoods of Wisconsin.... so not ready.. I think I need someone to send me an electric blanket:)

Wednesday, September 14, 2011

Okay...Now Where's MY Caregiver?

What goes around comes around...s'posed to anyways... well, sometimes. Many of you know that I have been full time caregiver to my husband for awhile now as he has had a brain injury back in 2005, and is still on quite a few meds and survivor of colon cancer in 2009, and many many episodes in and out of the hospital with Pneumonia and various illnesses over the past several years. There are of course all of the emotional ramifications of a brain injured person to deal with and if you really don't have a clue.... look it up on the internet for Gosh sake and get yourself informed, because pretty much my husband has displayed all, and more, of the behaviours that come with the territiory!  I have pretty much put up with it all. However, this past year I have become very sick with Sarcoidosis in not only my lungs but my lymph nodes, and also have chronic fatigue syndrome and fibromyalgia. In June, I had major thoracic lung surgery and am still dealing with the recovery from that as I had a wedge of my lung removed. Trying to deal with all of this along with all of his mood swings and argumentative stubbornness is not helping me to get any better. Therefore I am making a decision to separate myself from him and I guess his family is going to have to just pitch in and do the job. After all, they all moved up here next to us to be involved in their dear ol' dad's life so I guess this is the why. I am just not well enough to deal with this and I am courageous enough to say so. Lately I have had to put up with a lot of his rantings and ravings and bullyings and it has become an everyday occurrence and my health cannot handle it.  I got brave enough to call 911 about a month ago now, and of course I am in the wrong for doing so. He of course is trying to save his own skin once more by shifting the blame to me, but after all that I have put up with from him I cannot imagine this injustice! So, here I am this morning ... asking you my friends for prayer...

Monday, September 12, 2011

Another Week!

A celebration of some kind should be in order .. I think. I did survive my first week of Prednisone after all! Today begins week number two and so far I have not gained any weight thankfully! I remember the last time I was on this nasty drug I gained over 60 pounds, so I am watching very carefully the carbs and sugars I take in this time. Keeping an eye on the blood sugar and the blood pressure, and all of the rest of those nice little  extra things you have to pay attention to while on this drug.... like, don't be around anyone who is sick! This is going to be a challenge I am sure, since flu season is just about upon us... I am going to try to do my part ... it is always nice if others respect your wishes and stay away when they are sick but it doesn't always happen, as you know. So begins week number two... symptoms are pretty much the same as week number one.. but that is to be expected. My lymph nodes have been enlarged for a long while, my lungs have been congested pretty much since last April, so I am sure this is going to take more than just a few days or weeks to help. As I look out my window on this September morning I see the sun reflecting off of some colored leaves! I will enjoy the beauty of this fall.. This disease has made me wake up and notice things around me a lot more. Perhaps a rude awakening to the fact of the shortness of life. What I need to do is enjoy this very day! I hope you will too and don't let anyone or anything ruin it for you.

Friday, September 9, 2011

One Week and Counting

One week! That's what it has been since I began treatment with the Prednisone 20mg twice/day. So far, all I notice is that my lungs seem to be more congested than ever, have had a severe headache just about every day, along with all of my other "normal" aches and troubles. But I am willing to give this a go..... as the docs all tell me I should, since it is supposed to be the drug of choice for Sarcoidosis. I think if I ever actually begin to feel better then I may actually be convinced that it works! Stay positive...they keep saying.... don't think about all of those lymph nodes that lit up on your pet scan! Hmmmm... Maybe I wouldn't even give it a second thought if I felt okay, but the truth of the matter is, I can tell something is terribly wrong in my body. As I sit here this morning, drinking my coffee and thinking, praying, and feeling to be quite honest, crappy, I do have something to be thankful for.... I am still here after my first trial week of Prednisone.

Wednesday, September 7, 2011

Huffing And Puffing Kind Of Day

Oh boy.. this has been a very long tiring day number five on the Prednisone! It started out with my chest hurting and my lungs aching. I couldn't seem to take more than a few breaths in a row without coughing today. It was just one of those huffing and puffing kind of days. I am hoping that after the next Pulmonary function test the doc is going to give me an inhaler so I can breathe a little easier. I guess I am a tad disappointed since I thought I would start to see an improvement in my lung symptoms after beginning the Prednisone but so far the symptoms seem to actually be getting a bit worse. Maybe they get worse before they get better? Anyway I am hoping that I am so tired from coughing today that I will konk out and get a good sleep because I sure am tired! I am hoping for a better Sarc day tomorrow!

Tuesday, September 6, 2011

A Bad Day Is Better Than No Day

I am finding out with this disease that is so unpredictable, that Sarcoidosis and Fibromyalgia go hand in hand. I am not sure on this but I think that most of us who have been diagnosed with Sarcoidosis by way of biopsy, have also been diagnosed with Fibromyalgia prior to that. The weather has taken a turn towards fall now and with the dipping temps my body is already going into an achy mode. The joints are stiff and everything basically hurts. I am now on day number four of Prednisone to treat the Sarcoidosis. The purpose is to reduce inflammation in my lungs and lymph nodes. It also is supposed to help with joint inflammation. It does have a lot of potentially dangerous side effects however my symptoms have become pretty severe so I have to do something! Anyway, it is not the only medication I am on. I also take meds for muscle cramps, migraine headaches, vitamin B-6 deficiency, vitamin D deficiency, estrogen, and of course one for chronic pain. I pretty much do not have one day when I feel "good" anymore but I try to push my way through my day and smile when I can muster up the muscle! I know I am not alone in this battle... there are many others just like me all over the world whom I have met online. Some are better off than me but there are some worse. I have to be thankful for  each day that I awaken and I am still breathing, for there must be a reason I am still here. So I figure that a "bad day is better than no day."

Thursday, September 1, 2011

Joining The Ranks!

Okay...that's it my Sarkie friends... I have officially joined the ranks of the Prednisone People! Today I finally had the appointment that I had waited such a long time for ... one with the pulmonary specialist who deals with Sarcoidosis of the lungs and the lymph nodes. I of course keep very good notes of my symptoms which I have learned is a good idea or else you tend to forget what to mention while you are actually in the doctor's presence. I gave him my list and he of course was concerned but mentioned that the shortness of breath, chest pain, coughing were all typical of Sarcoidosis but all of the other symptoms...well... not sure if they were all Sarc related... and was my primary care doc aware?? Of course... that's why I went to the oncologist in the first place because my primary thought I may possibly have Lymphoma... but the oncologist wanted to label all of my symptoms as Sarcoidosis and now the Sarcodosis specialist is concerned that there is more going on than only Sarcoidosis!! I completely give up!! So .. we decided to go ahead and treat me with Prednisone as so many other Sarc doctors do with their patients and we will just have to see how my body responds to the treatment. So ...I guess I will hang on for the ride! If this does not work or I develop weird symptoms then we will have to try something else like methotrexate. So I have officially joined the ranks of frustration with all of my other Sarc friends who have been through this already and have warned me  and for those who like me are just now going through this and finding out for yourself that the medical profession really knows diddly squat when it comes to this disease!

Wednesday, August 24, 2011

Sarcoidosis Shame

I think it is a downright shame that this rare autoimmune disease that has been around for a very long time is still so unheard of! I think it is a shame that people are dying from complications of this disease because there are too few doctors and nurses who even have information on this disease. I think it is a shame that when you are in the hospital and mention that you have this disease  the staff have absolutely no idea what disease this is! I think it is a shame that people who have hardly begun their lives are dying from this when there could be something done! I think it is a shame that doctors tell their patients that this disease is nothing to worry about and that they will not die from it like cancer... when in reality it affects the whole body, damages organs and disables. I think it is a shame that the social security administration still does not acknowledge in full that this is a disabling disease. I think it is a shame that when looking for a physician who deals with only Sarcoidosis.... it is next to impossible to find! When is any of this going to change? It is true that not everyone with Sarcoidosis has it to the same extreme, but believe me  when I say that if you had this you would not want it! Every single day there is pain, discomfort in my chest, joints, back, under my ribcage, headaches, muscle spasms, numbness, tingling in hands and feet, night sweats, very little sleep,moodiness,pain through the shoulder blades, itchy and burning skin, extreme fatigue,and yet each day I try to get up and do the many things that need to be done around the house or run the errands, pay the bills, organize my husbands pills, etc. I still await any real help from my doctors. At best I have an appointment once again coming up with the Pulmonologist who deals with Sarcoidosis of the lung but obviously I have much more involvement than that. We will see which treatment plan he decides upon. Pretty much whichever is decided upon is only a small help anyway. There is no sure fire cure or any one medication that really works all that much better without side effects. This is really a shame that more research is not being done and that there are not more fundraisers and campaigns to raise awareness amongst the medical professionals concerning this. I give a hand to Cleveland Clinic in Ohio...they actually seem to be the most updated on Sarcoidosis and actually seem to be helping people, but what about the rest of us sarc patients who cant get to Cleveland? There needs to be a Sarc clinic in every major city at least!

Wednesday, August 10, 2011

Sleeping With Sarcoidosis

I wonder if anyone else with Sarcoidosis has been having the sleep issues that I have been having. They must since it seems they all talk about chronic fatigue...pretty much I believe the chronic fatigue comes into play because of the fact that I don't ever get a full night's rest. Usually I have no problem falling asleep but within a couple of hours I am wide awake with night sweats, and usually some kind of horrible pain going on. Sometimes all of my joints and bones... sometimes everything... sometimes the headache! Usually I end up taking a second round of pain meds in the middle of the night to make it through the second half. I toss and turn and catch a few winks in between and then around 5:30 or 6 my cute little dog decides it is time to get up! If I happen to just lay there and try to rest then she will search the floor for a sock to dangle in my face. So, in order to avoid that nastiness I usually get up at her prompting. I am OK throughout the morning after my extra strong coffee to get me pumped but about 2 every afternoon I have the worst case of fatigue ever. I don't dare take a nap or I know I won't get to sleep at all at night so I just fight it .  I sure wish there was a magic pill that would help me just get the rest I need. In between these few hours of coffee drinking and onset of major fatigue.... is when I have to try to get something accomplished even when my body is telling me to forget it! It takes a lot of "get up and go" to do this when you feel like this every single day! Hats off to all of my other friends with this awful chronic illness that makes you feel terrible...and to all of my friends who have another disease and keep on keeping on day after day in spite of it! Here's to a good night's sleep!

Monday, August 8, 2011

Symptom By Symptom

How to deal with a Chronic illness.... symptom by symptom.... one by one! Sometimes the symptoms come faster than one at a time though... and you have to think fast and be resourceful. If you haven't guessed by now, this illness I have  has no cure.... just maybe some remedies that may help reduce the symptoms here and there but no cure! Right now I am dealing with my lung, liver, and kidney. Hopefully these issues will subside once I begin the treatment with whatever my doc decides upon at my next visit... either Prednisone or Methotrexate... or whatever? If you have any kind of chronic illness then you also know that each new day may present itself with a different challenge for you. All you can really do in each case is treat the symptom at hand and try to stay as positive as possible. I already have accepted the facts that this is not going away and that it is progressive in nature. All anyone has is one day at a time.... so as each new day approaches and with it a few more unwanted symptoms... I will deal with them , symptom by symptom....one by one.

Sunday, August 7, 2011

Sarcoidosis Scratching

A new symptom seems to have risen... a very lovely one at that... full body itching. No rash,  no bumps, no bites, no hives... just prickly- feeling itchiness! Ahhhhhhhh....very annoying.... it does not make for a good night's sleep. I couldn't even sit through a movie last night but had to interrupt it for a shower to see if that would maybe help me stop itching! Then I decided to take some benedryl along with my normal night pills in hopes that this would at least help me sleep but my spouse decided he was going to stay up and watch TV loudly until 4 am and the pills just somehow did not drown that out. So today here I am once again wondering why I am feeling this prickly itchiness all over...wanting to get up and get out to church but not daring to since I don't want to look like a monkey scratching myself! I got curious once again to see if anyone else with Sarcoidosis had itching, so I looked it up  and found out that many do and many have it also with liver enlargement, which I also have ... so I guess it is par for the course and I will just have to cope and not go crazy!!

Wednesday, August 3, 2011

What's Next?

The long awaited visit with an oncologist finally took place yesterday. It was like any other doctor visit lately full of questions with half answers that really didn't answer anything. He did however give me a look at the Pet Scan of my body every other doctor has been fussing over since May. I have to admit that when it was explained to me that usually the brightest spots are cancer... I was indeed a bit frightened and alarmed by the body image on the computer screen. I have been saying 15 lymph nodes... I think one doctor threw that number out there at me..... it was an understatement. I tried to count quickly as I was looking but just too many and too clustered together.  I basically lit up like a Christmas Tree as you have heard some say. My Pet Scan looks like I have Lymphoma... my body is acting like I have Lymphoma, but since we know for sure that a few of the chest lymph nodes are sarcoid we need to treat the Sarcoidosis first and see how the lymph nodes all respond. There were lights around my kidney, liver, lung, ...not good as I see it and explains why I feel lousy... and my liver is enlarged. OK... I will go with that... I am not game for jumping into cancer treatment if I do not need to....now the key is what treatment for Sarcoidosis will I use? The standard is Prednisone or Methotrexate and I am guessing it is going to be the Prednisone simply because it is probably the one covered by insurance. So in order for these lymph nodes to reduce I have to start treatment. If by some weird chance the other lymph nodes that were not biopsied are in fact lymphoma, then they will continue to grow and multiply in spite of my treatment and then a different treatment plan would go into action... so for now the diagnosis at hand... Sarcoidosis! As for my treatment.... I have to wait until my return trip to the Pulmonologist in September to begin any treatment. On and on this story goes... I wonder if I will ever feel any better or if this disease is going to take over my entire body?

Monday, August 1, 2011

It Makes The List!

I was told many times over the past twenty years that my "mystery" disease was probably some type of rare auto immune disease. Well I am now fifty-one years old and have finally made the list! The list on the National Organization of Rare Diseases. If you go to their website and search Sarcoidosis you will find it amongst the other rare diseases listed. I was just thinking on all of the many doctors I have seen over the past twenty years and all of the many different theories that I was given. Here are a few of them...."you may have Lupus,or Multiple Sclerosis, or Lyme disease, or Lou Gehrig's disease, or Hodgkin's Lymphoma", or......on and on the list goes. I had one doctor tell me that my body was really not "text book" and he couldn't even think of a disease that would fit all of my symptoms! Wow. So now here I am with just a few simple lymph node biopsies and have a diagnosis for this rare disease! I had never heard of it and probably some of you never have either! It is indeed classified as an autoimmune disease that causes the body to attack itself. It causes granulomas or small lumps to form in the organs, especially the lungs, heart, liver, and can affect the eyes, skin, brain, nervous system and lymphatic system. It can cause you to be more prone to infections or other illnesses. It causes chronic fatigue, joint and bone pain, muscle pain, and basically makes you feel lousy all of the time... at least this is how it is for me. Sarcoidosis can have a more mild form that some people get that comes on suddenly, is treated and never comes back again but these people usually do not have any involvement with the lungs or other organs. I happen to be one of the "lucky" ones I guess, and it seems to be the chronic form of the disease which is more complicated. I have this other complication thrown in of having way too many lymph nodes involved besides just the normal chest ones that are usually involved with Sarcoidosis. But ...hey... I feel special... my disease made the list! I am indeed a rare bird!

Sunday, July 31, 2011

Sarcoidosis Saga

You've heard of people wearing many hats...meaning they have many different ways they present themselves or many different functions they perform. I am finding out that this rare auto immune disease that I have had for my entire life that just recently was given a name...also has many "hats" so to speak. My Sarcoidosis was diagnosed after I went through a month of terrible bronchitis like illness in my chest and went to the doctor for antibiotics. I was given a pulmonary function test which I did very poorly on.  I then was sent to the hospital for a second pulmonary function test which I also did poorly on. It was then determined that I needed to see a Pulmonologist. A few days later I was in his office and he sent me for a chest x-ray which showed two lung nodules in my right lung and he of course was concerned. Immediately he sent me next door to the hospital for a Ct scan which showed in more detail two lung nodules, lymph nodes in my chest enlarged and of course this raised some red flags. A Pet Scan was ordered for the next week. Pet Scan was done and the results were phoned to me and didn't sound too promising. I was told that fifteen lymph nodes lit up as well as the lung nodule in the upper right lobe of my lung. Whenever anything lights up on a Pet scan of course there is the suspicion of Cancer. The next step was an Endoscopic Ultrasound with Fine needle aspiration to biopsy some of the lymph nodes in the upper chest area. This was done and the result was that there were no cancer cells present in those particular nodes however granulomas consistent with Sarcoidosis. Next was a visit to the Pulmonologist who then referred me to the surgeon ...the Thoracic surgeon who would do the lung surgery to remove the wedge of my lung in order to biopsy the lung nodule. This was one of my most painful surgeries ever. I have had about ten surgeries so I do know what I am talking about. It has now been about six weeks since my surgery and my ribcage still is so painful when I inhale. The lung nodule turned out to also be consistent with Sarcoidosis granulomas. Thankfully it was not lung cancer, and I am thankful since that is  a very aggressive cancer; however what people don't realize is how insidious this disease is and can be also! Sarcoidosis causes blindness, joint and bone pain, chronic lung disease, liver problems, kidney problems, skin problems, headaches, chronic extreme fatigue, infections , the immune system basically attacks itself! And yes ...we are more prone to have cancer than the general person. Sarcoidosis in itself feels like, and mimics cancer. In talking with some other Sarcoidosis patients online I have found that most of us have at one time been told we may have Lymphoma, but it usually turns out to be the Sarcoidosis showing its ugly hats and mimicking it. However, there are Sarcoidosis patients who develop Lymphoma so there are no real answers as to why this happens. This last year I know my body has acted and felt as if I have cancer...I do not know at this point if the Sarcoidosis is solely responsible or if I indeed do have both. Usually Sarcoidosis patients do not have the lower abdominal lymph nodes light up on the Pet Scan and mine did so we will see if I am just one of those rare Sarc patients or if I indeed do have Lymphoma along with it. I go to the Oncologist on Tuesday of this next week and I hope I will come home with some concrete answers so I can begin some kind of treatment plan to help so I can at least begin to feel decent again.

Saturday, July 23, 2011

Hope For Answers

Sarcoidosis,Fibromyalgia, and...... don't know ....??? Maybe, I never will know. I have been to a few doctors this past week and am convinced that Sarcoidosis is indeed a "Rare" disease. There are very few doctors  who actually have a wealth of knowledge on this disease and even fewer who know how to treat it or what the prognosis will actually be for the patients who have this. For me, I don't like to have a "mystery" disease therefore I research as much as possibe. Why can't doctors do a little research for the benefit of their patient? I had one lung nodule removed from my right lung along with a wedge of lung. I still have a nodule in the lower lung and from what I have researched these will just continue to grow and form in other organs as time goes by. The center of my chest is painful and my lung feels as if there is a knife stabbing in there every time I inhale. The other chronic symptoms that apparently all go along with Sarcoidosis I have been having for a very long while but most intensely the past year. Headaches, muscle aches, joint and bone pain, night sweats, extreme fatigue, poor balance, eye problems, abdominal pain, flu-like feeling...and more. It is not a type of cancer but has been linked somehow to lymphomas. My Pet scan was back in May when I had started to have lung symptoms  in April with severe chest pain, shortness of breath, pain under my right rib. The Pet scan showed up many lymph nodes. Of course the ones in the chest were biopsied and turned out to be Sarcoidosis. No cancer cells were found in those. The lung nodule was also biopsied and that also turned out to be Sarcoidosis. My diagnosis then was Sarcoidosis. It is highly unusual for lower abdominal lymph nodes to be involved with Sarcoidosis. This is the why  of needing an oncologist to look at the Pet Scan to see what his opinion is. It would be nice to get some answers soon however, since this has already been since April, and if by some chance these lymph nodes are cancer I can't help but wonder if they are growing while all of this delay is going on?" Stay positive" is what my Drs keep telling me...how in the world is that going to give me answers? All I can do is wait for the next appointment and hope that my doctors will do some research and will be able to help me before I get too sick to care!

Thursday, July 21, 2011

Good To The Last Drop

My son found this old can of Maxwell House coffee underneath the kitchen stairs when we were tearing up the floor a few years ago. It still has coffee in it and has the original key opener on top. I remember the commercials for this coffee.....how they advertised it was "good to the last drop"! I do sometimes drink mine down to the very last drop especially on mornings when I really feel the need for extra caffeine! This made me think about all of us with a chronic illness. So many of my friends have mentioned at one time or another how they feel like life is over for them or their real purpose in life in through because they are now just sitting around sick all of  the time or in a wheel chair and can't get around to do much.  I say this to myself first of all and then to all of my chronically ill friends .....determine that you are going to be "good to the last drop". There is still something you can do  and someone somewhere that needs you even if you don't think so. I have heard people say to me at times..they wished there was something they could do for me besides "just pray"...but I say that if you can at "least" pray then you have done a lot! You can sit in a wheel chair, or lie in a bed and pray for other people. You will never run out of people to pray for... there is always someone somewhere in way worse condition than you are. I have found this to be true. Don't give up on enjoying the simple things. Life is made up of a ton of little things all put together. I have learned to appreciate the simple things by being sick. When I do feel well and get out and enjoy my day... it is a breath of fresh air. I plan on being good to the last drop... it ain't over til its over!

Tuesday, July 19, 2011

Confusion

Confusion....no it's not one of my symptoms! It is what is caused when you see too many doctors for the same problem. Right now I am in the middle of trying to figure out which of my doctors I should be listening to and which are full of hooey! When I went to my primary care doctor on Friday of this past week, she urged me to see an oncologist to review the recent pet scan. Keep in mind that this Pet Scan which is supposed to show up cancer, lit up 15 of my lymph nodes. Several were in the upper chest area and several in the lower abdomen. Also the lung nodule showed up which is why I had to have the surgery recently to remove the wedge of my lung. It was not lung cancer, but was said to be sarcoidosis. Also some lymph nodes in the chest were examined and said to be sarcoid. Usually Sarcoidosis affects the lymph nodes in the chest but can sometimes affect the abdomen however it is rare. Sarcoidosis and Lymphoma can co exist in the same patient at the same time so this is the concern of my primary care who has watched my health deteriorate over the past few years and this past year most dramatically. When I mentioned to the Pulmonologist that I would like to see an Oncologist before I decide on a treatment for the Sarcoidosis....my Oh MY....he got very upset and defensive as if I hurt his feelings! It is my life we are talking about here buddy! If I commit to a year long treatment plan on Prednisone as he was suggesting and I have Lymphoma too, then what in the world is the point of me going through all of the nasty side effects? Besides, I was put on Prednisone back in the day about twenty years ago by another doctor who also told me I had "some kind of autoimmune disease" but didn't know or care to find out which, so just dosed me with it. I did not do well on it.  Well... after I proceeded to explain to this doctor how rare of a person I actually am...he gave me the referral . I told him I will decide upon a treatment after consulting with the oncologist.

Thursday, July 14, 2011

Following Doctor's Orders

I am following my Dr.'s orders... I am supposed to be walking as part of my recovery process... to make sure my lungs are working and clearing. Today was a good day for a walk not too hot and not really raining either. I put on my new hat that one of my friends gave me and grabbed a walking stick, the bug spray and  off into the woods we went. I had no idea at the beginning of this walk that it was going to be so long and hard but it soon became quite obvious to me that what used to be an easy walk for me now was quite a task with this piece of lung missing! The grass had overtaken our usual path through the woods and the blades were up to my eyebrows! It was as hard as walking through a snowstorm. My chest was soon aching and hurting with each breathe but I know that I need this exercise in order to strengthen my lung and to start getting back some energy. I was thankful for the many distractions along the overgrown path. The blackberry bushes are already showing signs of a great season in another month and the apple trees have more apples than I have ever seen on them! Wild strawberries here and there were a nice juicy treat and a few ripe raspberries were tasty as well. No wonder the bears love this property... there are signs of them sleeping here and there where the grass is all trodden down in a huge round circle. It is nice to be able to take a walk on such a quiet piece of land and see so much. It sure beats walking around the block in the city any day of the week! So I guess if this is what the Doctor wants me to do... I will just have to keep on doing it!

Tuesday, July 12, 2011

It IS Called "Chronic" For A Reason

People can be well meaning but say some pretty stupid things to people who are sick especially to those of us who are chronically sick! You see, when you have something that is never going away such as a chronic illness it seems pretty ridiculous when someone asks you if you feel "better". The fact is.... if you have a disease that is chronic that causes chronic pain.... then you are never actually going to FEEL better than you do.  That is a sobering thought but for us with this disease the sooner we accept that the easier it is to deal with.  It is none the less still annoying however when people around you expect you to be jumping jumping jacks and feeling like weeding a garden or even doing anything at all....sometimes they just don't get it! I have a disease people.... I want to say... it is not an excuse, but it is a REASON why I do not do some of the things you expect of me! It is the reason I don't feel "good" most of the time! It is the reason I may seem a little less friendly to you  or maybe not as hospitable as you think I should be! Maybe I don't like to be analyzed by you every time you walk into my house! Maybe I just want to be accepted for who I am and for the person I am. Maybe you don't believe that I am really sick. Maybe you just don't understand medical things so it is way easier for you just to ignore my complaints and brush them off as nothing..... it is something to me...I speak for all of my friends I am sure... there are lots of us who have chronic illnesses but our friends and families just don't get it! They expect us to get better any second now and resume to our former self when we were full of energy and working....Our progressive autoimmune diseases are just that! Progressive....meaning... they will continue to worsen over time... things will not improve or just get better. Life will change. Things are not the same. Some of us will end up in wheel chairs,some in better shape, but overall, we need support of family and friends. Do us a favor....stop thinking we are going to get better! If we tell you we have an autoimmune disease  then accept this and stop thinking we are lying to you.... who would want it? Who would lie about that?

Friday, July 8, 2011

Yes... It Hurts To Breathe

Yes.. it really hurts to breathe...but ya gotta do what ya gotta do! Besides having a piece of my lung removed two weeks ago I guess part of the reason that my breathing is hurting is because of this Sarcoidosis in my lungs. I am learning a little bit more about this disease by researching online. I guess there are even stages. I have no idea what stage I am at .... I have been sick forever so  who knows? I know I do not have the mild form of sarc like some of the luckier people I have read about who seem to recover completely from a brief bout of illness with a diagnosis of sarcoidosis. I have been dealing with an autoimmune disease for the last twenty years so I am sure this is the culprit! Anyway...maybe when I see the pulmonologist he will tell me what stage he thinks I am in. For me it doesn't really matter. I just would like to breathe without feeling like there is a knife stabbing through my ribs! I guess it is time for a pain pill! I can only stand it so long and then I succumb once again to the short lived relief that a pill will deliver.

Thursday, July 7, 2011

My Newest Diagnosis

Well the latest diagnosis is Sarcoidosis! So now that means I have....Fibromyalgia, Sarcoidosis, and possibly Lymphoma? The Lymphoma is an educated guess....but as time goes on will be more clear if it is true. The Pet scan showed up fifteen lymph nodes and the dr told me that usually with this many involved ...even with a diagnosis of Sarcoidosis , there is a strong liklihood of a source of cancer somewhere possibly even the lymph nodes themselves. There have been studies done confirming the link between Sarcoidosis and Lymphoma. But for now... my next step is a visit with my pulmonologist on the 18th, when we will discuss treatment options and future scans,etc. Then my primary doc also will be involved and my neurologist since I have many nervous system problems as well. I am going to use this blog to keep everyone informed as to what is going on and to maybe raise awareness for this unheard of disease! I saw one statistic that said in the US...11 in 100,000 people have it....that is fairly rare and  I am one of the 11! I guess I am a special one!

Sunday, July 3, 2011

Fibro Fourth

Sometimes you just have to grin and bear it! Yikes...Maybe a loud parade and the booming fireworks can blast out the pain or at least help you forget about it for just a little while. This is not my first fourth of July when I have been recovering from a surgery. It happened to me once before back about twenty years ago. Boy, just writing that seems so hard to believe it was even that long ago! I recall being in a lot of pain after abdominal surgery and everyone else was having a good 'ol time blasting off fireworks and eating all kinds of goodies.  Once again... I am at a point of not really giving a care about the fact that it is a hoop- ti- lah holiday for everyone..... I would just as soon kick back and take a few pain pills and forget about the world.....maybe just sip a cold drink on my porch out front with the sunglasses on,  and watch the clouds roll by! Of course wishing I was in my favorite place by the sea, but  overall, just happy to be able to relax and celebrate my "Fibro Fourth"!

Sunday, June 26, 2011

Fibro Flub- up

I am beginning to wonder if doctors all get together and decide on a disease of the month....? I am running into way too many people who say they have Fibromyalgia yet don't even know what it is or what the symptoms are. Hmm. Some may be for real but I am starting to think that some of these people had a Dr that just labeled them with fibro to get them to quit trying for answers to their medical mysteries. I for one, have many medical problems, not just one simple answer. Thankfully I also am privileged to have some really good doctors at this point in my life; however can't say it was always so. If your doctor tells you that you have Fibromyalgia you need to ask a few more questions... and make sure you are tested for everything under the sun that can give off the same symptoms before you just accept that as your final. A person with fibro usually has other diseases going on at the same time. Just saying....be careful and make sure you get the care you need and don't become another "fibro flub-up" of  another Dr. just trying to get you to leave him alone!

Friday, June 24, 2011

Fibro Friday!

Hooray it's Friday! That's a great feeling if you have been working all week and have been looking forward to the weekend. For me ... today it means I have survived one more surgery in my lifetime! One week ago today I was lying on a pretty uncomfortable hospital bed with an even more uncomfortable pillow under my neck. I was at the hospital this time for lung surgery. The most serious surgery that I have been through yet.  I had IVs in both arms and was soon being wheeled off to a large operating room where many people clothed in surgical blues were scurrying about preparing for my upcoming appointment with them! As things began to fall into place and they began to settle in around me I began to feel very sleepy. I honestly don't remember the recovery room this time...usually I do but the next thing I remembered was being wheeled into my room where my son and daughter were waiting. I am sure neither of them realize how much that means to someone coming back from surgery....but to me it meant so much more than I can put into words. Unless you have been that one on the hospital cart not knowing if you are going to live or die... then you really don't understand how much it means to know that someone... somewhere... cares about you. I think about all this today as I sit here on my sofa in pain. At least I am still here feeling that pain... and I am thankful for my family and for the many many people who have shown concern this past week. Today is Friday and I am so glad I have made it through this painful week and have hope that this next week will bring continued healing and less pain. Maybe you need to look at where you were last Friday in order to be thankful for where you are today. 

Wednesday, June 15, 2011

Fibro Farewell

Farewell my Fibro Friends...this is the last post before I go to the hospital! Tomorrow morning is the day we pack up early and head to the hospital. The first day is just pre- op stuff and I will not be officially admitted until Friday. After they are finished with me tomorrow, we will get our motel room and actually have our pick of a really good place to eat! My "last supper"! Then up bright and early on Friday morning without coffee.....oh no....not again!!! I hate that part the most! My surgery is supposed to be sometime first thing but as surgeries go....that doesn't always happen that way.... we will see. I will probably not be posting anything on this blog for  a few days....maybe longer.... depends on how doped up I am...I don't think I should write if I am a bit loopy! However, maybe I am like that anyway and just don't know it? Well...until I get back at it again...farewell.... Later Gator....After awhile Crocodile!

Sunday, June 12, 2011

Fibro Fervor

I guess you could say I have what you would call "Fibro Fervor" or in other words ...Persistence! It has been a royal pain in the pinfeathers to all of my doctors I am sure because they especially have had to listen to my chronicles of chronic complaints for the last year over and over and some of them I do believe were starting to think I was nuts! You see, it all started when years ago doctors thought I had MS but then later after several MRI's of my beautiful brain decided that was not my disease! They then started throwing all kinds of other possibilities at me. Then two years ago I had my gallbladder removed! Ever since I have had one problem after the next. I have fractured my foot, found out I have Osteoporosis, Vitamin B-6 deficiency, Vitamin D deficiency, migraines, fibromyalgia, ulnar nerve damage in both arms, and on and on the list goes. The persistence or "Fibro Fervor" as I call it, comes in here..... I have had this chronic terrible pain up under my right ribcage ever since my gallbladder problem in 2009. I have told doctor after doctor. I have been told...you may have adhesions....maybe it is phantom gallbladder pain....maybe you have shingles...maybe it is in your head...(NO.....IT IS IN MY RIB CAGE!)  I really was getting tired of telling all of my doctors about this chronic pain so I finally stopped mentioning it to them just recently. Then in April, I started having really bad chest pain that just didn't go away even when I rested so I went to the Dr once again. I noticed that this pain in my ribcage was getting to be more constant and severe however I decided I would just shut up about it this time since no one was listening about this anymore! My doctor decided to do a lung function test and I failed....hmmm. So then on to a chest x-ray, CT Scan and PET Scan. Very interesting! Well... the doctor discovered that in my right upper lobe of my lung there sits a good sized lung nodule that looks like cancer. I sure do wish they would have explored my complaining about my ribcage pain a bit sooner!! So I am telling you my Fibro friends....be persistent...because you know your own body! You alone know what and how you are feeling! Keep telling your doctor the same thing over and over until they do something about it! My doctor just looked me in the eye and said..."I just want you to know that at no time did I ever doubt you.... "  HMMM. Anyway...now I am facing surgery on Friday of next week to remove this nodule. It is too embedded to just remove a small wedge of my lung so a whole lobe of my right lung must be removed in order to be sure they get it all in case it is cancer. Don't let your Doctor talk you out of your symptoms. I know they have done that to me. Be persistent if something is really an ongoing problem... make sure they investigate it!

Wednesday, June 8, 2011

Fibro Fifties

I thought I had aches and pains in my 30's and 40's....HA! I had no idea that the fifties would roll in like a tidal wave of  problems. One body part after the next is falling apart! It seems I just get one medical problem fixed and straightened out and then the doc tells me there is something else they found that is even more troubling than all of the rest! I am about ready to throw it all to the wind! I wish I could... however I don't even have the energy to get up and do that I am sure! One of the technicians at the hospital the other day looked about as tired as I was feeling and he said that he had just turned fifty-two and his body felt crappy! I thought Richard Simmons said something like fifty was the new thirty or something like that??? or at least someone said that.... sorry Richard Simmons if It wasn't you! Anyway...enough of my rambling on like a bumbling idiot! Today I get to go and sit down with a Thoracic surgeon to discuss the lung nodules they discovered on my lovely PET scan. This lung nodule may be sarcoidosis like a couple of the lymph nodes that glowed on the Pet scan also or it may be cancer...but no one knows for sure....thus...it has come time for the knife of a skilled surgeon to slice into my ribs and take a chunk of my lung. I wonder what other body part is next? I have already had quite a few surgeries ....don't have a lot left to take out! Oh well...you all have a wonderful day and enjoy the heat. I for one am so glad the sun is actually shining for more than two days in a row and it is actually warm enough that I am not shivering.

Sunday, June 5, 2011

Fibro Fantasy!

I saw this and had to laugh! If only it were true...right? For those with Fibromyalgia it is difficult to find a medication that actually works! I am on a combination but nothing really really helps tremendously to the point where I would look like this lady in this picture! My idea of doing the housework these days is looking at it from across the room and wishing I had a maid! The fatigue level is just that great and unless you have this you would not understand. It goes far deeper than just feeling a bit tired. I have pretty much resigned myself to the fact that it is a fantasy to believe that there is anything out there that can actually take away the pain of Fibromyalgia, besides the chronic fatigue that comes with it. But that's OK if you want to fool yourself and try every crazy remedy that is on the market that people are making tons of money on!  As for me.... I will do the best I can each day on what I do take and endure what pain my meds don't help. It does help to try and get my mind focused on something else...for me, that "something else" happens to be writing, so whenever I get busy on my writing projects, I do tend to forget about my pain, at least for awhile.

Friday, June 3, 2011

Fibro Fretting

Here I am back again with another phone call from my doctor. I always hate getting those! They never seem to bring me good news these days. Now it seems my kidney function tests have shown that I have renal insufficiency! How nice. Well at least I now know that the pain in my back is really not in my head...ha ha! No wonder my legs and ankles are swollen! Drink more water...hmmm been doing that already. Oh well. I wonder what body function is going to poop out on me next and which specialist is going to be the one to point it out! I go to yet another specialist on Monday who has many more tests scheduled for me. I sure hope they are worth my time and the gas it takes to get there! Answers would be nice at this point. So far all I know for sure is that I definitely have Fibromyalgia, lung nodules,fifteen enlarged lymph nodes,possible Sarcoidosis, and Renal Insufficiency......hmmm. Just doing some "Fibro Fretting" here....some of you have worse than me....so I should not even whine! Just  praying for my group of doctors to get it together and have the wisdom to figure this thing out before I croak! After all, I would like to have the privilege of knowing what disease I have been suffering from...why should everyone else get to know that after I am gone?? You would think with all of the medical technology and advances they would be able to get to the bottom of this a little quicker....oh well...sorry for fretting...maybe sometimes you feel like fretting too....maybe all of us with chronic illnesses do it once in awhile...so forgive me today.

Thursday, June 2, 2011

Fibro Fakers

Fibro Fakers....yeah there are plenty of them...you and I have both met them, but the truth of the matter is....Fibromyalgia is very REAL!! Look at this chart ....if you experience most of these symptoms then you can probably say that you have Fibro however I have come across a few people who when I mentioned Fibromyalgia... they quickly say...."oh yeah... I have that too. " But then when you start to compare notes they really don't fit the classic symptoms, so you have to wonder....are they for real, or just a Fibro Fake? I think that some people just say they have Fibromyalgia without getting a doctor's diagnosis. I know it is difficult to find such a doctor ...it took me several years to finally get the right combination of doctors, but it is important. Anyway if you just think you may have Fibro ....check your symptoms with this chart and go see a doctor who knows about Fibromyalgia. My neurologist was the best informed on this, so I recommend you see one. Make sure you have other medical tests done as well because fibro symptoms can be very similar to other disease symptoms that can  go overlooked if you just get a diagnosis of fibro right away.

Wednesday, June 1, 2011

Fibro Feuds

Pick your battles wisely...heard this before? Well if you have Fibro then you know that your energy level is low like mine. You definitely do not have the energy required to be fighting battles that don't matter. I am learning this slowly but it is important! Why waste what energy you do have on things that really don't matter? Let other people fight those battles....use your energy for things that make you better not bitter. People with Fibromyalgia for some unknown reason tend to be very sensitive and emotional... I know for a fact this has always been true of me. I do get my feelings hurt easily and get in a tizzy over things that maybe someone else would just shrug off as trivial. I am on purpose making myself ignore things that would usually make me upset and on the defensive....because when it comes down to it.... I just am too tired to argue with you! I would rather spend my day thinking on good positive things that make me smile. So I guess if you have irritating people in your "Fibro life" .....maybe you need to just try and block  out their negative energy. I remember each day that "the joy of the Lord is my strength." So let the mess flow past you and enjoy your day.....you don't have the energy to waste on people who bring you down!

Tuesday, May 31, 2011

Fibro Feet!

Ouch!! The last few days have been a bit on the painful side in regards to my FEET. I don't usually have too much pain in my feet and ankles but for some reason the past week or so my feet, ankles, legs have been so swollen and achy. I have been thinking it might be from my kidneys and even mentioned it to one of my many doctors one day but it was dismissed of course ,as just another of my many complaints. On Friday I went to another Dr. and I decided to not even mention it, and wouldn't you know it? This Dr. actually noticed that my feet and ankles were swollen; so ordered blood tests to check my kidneys! Impressive...Very Impressive! Anyway...so here I am this morning trying to keep my ankles elevated and regretting that I will have to wear those tight nasty support stockings on this humid day, in order to keep the fluid retention down! OK...sorry for complaining at you all... You all probably feel a lot worse than I do so, I apologize. I am supposed to be cheering you up! Just being honest here....after all it is MY blog and on MY blog I get to say what I want.....right? I have that privilege! I figure if people don't like what I have to say .....well then....they can just choose to not read it right? But you know what they do? They keep reading it to see if you are gonna say something else that is gonna make them mad! Funny! Anyway.... I hope your feet feel better than mine today.... and maybe you have "Happy Feet" instead of Fibro Feet.

Monday, May 30, 2011

Fibro flutters


Difficulties help us grow stronger they say.... well I should be pretty strong by now...

Tuesday, May 24, 2011

Fibro Flu


Sometimes I think ignorance is bliss...but other times it is just downright outrageous! Have you ever told someone you have Fibromyalgia and then watched their reaction to the dreadful news? It isn't a bad case of the Flu!  Some act as though you just told them you have leprosy and that if they come within 6 feet of you they will catch whatever this horrible disease is! Hilarious. This is why there needs to be public awareness people! There are still a lot of ignorant people lurking around all about us! They have no clue as to what Fibromyalgia is. They have no idea that people with it feel lousy most of the time and that we are not lazy....just plain exhausted and are in pain. Fibromyalgia usually does not travel alone, as I am finding out! It seeks out companions....other diseases! Usually for reasons the medical profession has no real answers for, people who suffer from Fibromyalgia are more likely to suffer from other chronic illnesses along with it. Lupus, Cancer, Rheumatoid Arthritis, Sarcoidosis, Chronic Fatigue Syndrome....just to name a few and I know there are many more. If you happen to be one of those fortunate people out there who are not sick with anything at all then please be understanding when you come across one of us "Fibro Fanatics" and don't shrink away as if you are going to catch the Flu, measles or chickenpox from us! We are not contagious!

Thursday, May 19, 2011

Fibro Frustrations

Frustrations .....really? I can't even begin to list all of the many diseases that I have been told I have over the past twenty years...including Fibromyalgia! Now there are a couple more to add to my list which I won't say I definitely have yet since my doctors are still scratching their heads over my test results and consulting with each other! As I do more and more research I am overwhelmed and frustrated at the same time. No wonder my body hurts and I feel so stinkin' lousy!! I sure do hope they can figure this out quickly so I can start feeling more human and get on with the act of living a somewhat normal life again. I am supposed to be taking care of my husband who has a brain injury and is on about 15 meds and needs me....I just don't have the energy to even take care of myself...so this is urgent....they need to get on this ASAP! I am finding out though that many people with fibro suffer from multiple diseases...this is not so uncommon. As if Fibromyalgia is not enough! Yikes! The thought that this is as good as it gets and I am never ever going to feel any better than I do today is a real bummer! It will get worse as time goes on, the Dr. says......Oh joy! It will affect my organs one by one....wow...that is something fun to look forward to. Guess I had better enjoy this day with it's aches and pains and be thankful it is not any worse than it is today! One day at a time! God give me the grace and please pass the pain pills!

Sunday, May 15, 2011

Fibro Fluorescents

I noticed for years well before I was ever diagnosed with Fibro that walking around in a large shopping mall or a store where there are bright fluorescent lighting bothered me. I always seem to end up with a headache and feel a bit dizzy and really start feeling like I need to get out of there. Then I read somewhere that fluorescent lights actually do affect people with fibromyalgia in a negative way. The push is on to replace light bulbs in our homes with these energy efficient bulbs but even these can cause problems for people who have fibromyalgia. Natural sunlight coming through my windows is my solution during the daytime and I really try hard not to be under any fluorescent lighting for any length of time. If you haven't replaced your light bulbs in your home to the energy efficient fluorescent ones....I would say, don't. We did, however I am planning on going back to having regular light bulbs. I would rather pay more on my electric bill than feel dizzy and have frequent headaches.

Thursday, May 12, 2011

Fibro Fighters Unite!

This is the day...Fibro Fighters from all over the world will be wearing purple today and will be attending various activities in support of Fibromyalgia Awareness Day. May 12th was chosen as the day since it is the birthday of Florence Nightengale...famous for her nursing and changing sanitation for hospitals. She suffered from a chronic "mystery" illness that many people believe was Fibromyalgia and ME; regardless of what it was...it was chronic and she was a fighter! 






Tuesday, May 10, 2011

Fibro Funk

It has taken me all morning to get it together....so I guess you would say I am in a Fibro Funk! Maybe you are too? I have been fighting a cold on top of it all this week, so in general feel pretty lousy. I would normally be getting up and out of the house by now to go join my friends for lunch and then our weekly Bible study....but today for the first time in a very long time....it is just not happening! Sorry guys! I will miss ya. Hopefully you will miss me too. Someone else will have to eat my chips! I am in a Fibro Funk....ya know what that is?? When you are too sick to move....my head hurts...chest hurts...coughing...snotting. ...aching..... UGH!!!... Fibro Funk!!

Monday, May 9, 2011

Fibro Fact

*Eliminating As Much Stress As Possible Helps Relieve Symptoms*

I will have to say...this is the absolute truth! I have definitely had a ton of stress factors involved in my life which have contributed to my health issues for sure. Some of our stress we can actually help to reduce if we work at it. It isn't always easy to eliminate it all, but even getting rid of a little bit of it helps! Sometimes it means not being around people who constantly bug us or irritate the daylights out of us. We all have them...you know what I mean! Sometimes, it is as simple as organizing some things around the house so there is not quite so much clutter to deal with. Then there are a few other simple things we can all do, like go to bed at the same time every night... get up at the same time every day... take a nap at the same time each day... find time to do at least one thing every day that you thoroughly enjoy...listen to your favorite music... and most of all quit worrying!! I have learned I cannot control everything!! Big newsflash right? I am the queen of control freaks! I have had to learn to just sit back a bit and relax and not get so bent out of shape when things don't go MY way. I have and still am learning, the importance of prayer in my life. I pretty much have to pray my way through the day... and maybe this is where God wants me....totally depending upon Him; for without Him ....I am a mess...and that is when I begin to Stress!

Sunday, May 8, 2011

Fibro Fur

I really should not have animals! I have always had allergies and you probably do too if you have fibro; it seems to be another common thread amongst us. I do love animals however and just can't seem to get away from them. I prefer dogs over cats and do have a very sweet English Cocker Spaniel but also have three cats! One was rescued by my daughter who loves animals, and the other two by my husband who found the two kittens together helplessly begging him to take them home from a creek where he was fishing! So, now every time I need to lay down for awhile and rest...well, it never seems to fail, at least one of them will come and get right on my stomach and lay there! The fur does get to me and bother me but I have learned to put my allergy medicine to work and it is not so bad. They do give a lot of comfort and always seem to know when I feel lousy. Such compassionate balls of fur! I guess I will continue to put up with them.

Friday, May 6, 2011

Fibro Finesse

Yes...I did say, finesse! Sorry but if you have Fibro or any other illness similar to it that challenges your balance, then you do Not have finesse! We have a tendency to trip over nothing and to be able to break our bones at a blink of an eye! Who ever heard tell of breaking your foot while getting up from a table at a restaurant? Yep...that would  be me! I won't go on and mention all of the times I have tripped over myself or just plain not been paying attention to where I was going...and bumped into something or even someone! So, yes...this button is so true and accurate, at least for me...and probably for a few of you too...my dear fibro friends! Have a good day and watch what you are doing!

Thursday, May 5, 2011

Fibro Fairy

The Fibro Fairy seems to skip us by sometimes.....the sleep fairy that is... I  usually have no trouble falling asleep almost as soon as I hit the pillow but for some reason this body wants to wake up bright and early at 3 or 4 every A.M.! It is not cool! Of course it is very quiet in the house at this time of day....not a creature is stirring, so I am usually able to sip coffee and relax. I pay for it however later in the day. Around one or two every afternoon I feel as if I have been run over by a mack truck, but that is when I usually am out and about running errands and doing the needed things around the house. This is when I would like to just lay down and die on the couch....but can't! I wish someone somewhere would come up with a solution for those of us who suffer from this sleep disorder. If  I could just get a full eight or nine hours every night consistently I think I might feel better! I have noticed a lot of my fibro friends have also mentioned sleeping problems so I am guessing this is pretty common in people with Fibromyalgia and other chronic illnesses. May the sleep fairy be kinder to us all!


Wednesday, May 4, 2011

Fibro Fitness

Fibro Fitness??? What a laugh!! Can you hardly even move out of your tracks when you are not feeling well? I had a doctor ask me if I get short of breath when I run and go up and down stairs and take walks and on and on...... I just dropped my mouth and looked at him and said...."Are you serious"?
I mean, c'mon! give me a break! I ache all over...I am not exactly going to run a marathon, I have to use a cane to keep from losing my balance and breaking another bone, my lungs ache just to take a breath......really!! Fitness is not really something that fits into my routine right now! I think if you are really sick then you are probably like me too. Maybe if you just are mildly affected by it then you might be a lot more active or push yourself to exhaustion like I did, years ago. My idea of Fibro Fitness today is waiting for it to get warm enough for me to sit outside, soak up some vitamin D and exercise my fingers on my keyboard! Maybe listen to some music too...or just enjoy the quiet of the outdoors! But I surely am Not going to run, lift weights, do aerobics or any other tortuous thing to my already aching body!