tag:blogger.com,1999:blog-5188665057605081242024-02-20T20:45:24.727-08:00My Life is a Soap Operagoldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.comBlogger309125tag:blogger.com,1999:blog-518866505760508124.post-39998156312408267412014-09-02T12:38:00.000-07:002014-09-02T12:38:11.296-07:00Reflections 8/28/14<em>I am to go over the bloodwork with my doctors in the coming weeks. This is the information I researched. This research and my reflections on this bloodwork are mine alone. After speaking with the doctors we will see how close I came to the correct answers.</em><br />
<em>Originally we were checking for the functions of my k</em><em>idney, thyroid,blood,myasthenia gravis issues. What really may be in trouble is my liver, bone, stomach, lungs, heart, blood and kidney.</em><br />
<em></em><br />
<em>Haptoglobin</em><br />
<em>measurers the amount of haptoglobin in the blood.. this is a level of a protein that the liver produces. This test is done to distinquish regular anemia from hemolytic anemia.</em><br />
<em>Mine is high. protein is given off by the liver. I should have liver concerns. This can also be raised by the predisone I am taking. The test is performed to see how quickly red blood cells are being destroyed. Red blood cells dying is done in the liver and spleen, some reabsorbed by body. high level may indicates inflammatory condtions in these organs.</em><br />
<em></em><br />
<em>Erythropoientin test</em><br />
<em>measurers the amount of hormone (erythropoietin) in the blood. This hormone tells stem cells in the bone marrow to make more red blood cells. EPO hormone is mady by the cells in the kidney. These cells release more EPO when blood oxygen levels are low. Increased EPO levels are due to polycythenia an over production of cell blood due to low blood oxygen levels or tumor. Lower EPO levels may be seen in chronic kidney failure anemia of a chronic disease. My EPO levels are doubled. I do have a increase in red blood cell production. The kidneys are over compensating with the EPO hormone due to my lungs and lack of oxygen in my blood.</em><br />
<em></em><br />
<em>Reflect: Having been exposed to toxic and carcinogenic chemicals in 2002, my lungs have been damaged. Advancing health issues seem to originate with lung damage and low Pulmonary Function Testing. Then over the years, sleep apnea, obstructive airway and COPD issues. Now severe lack of hemoglobulin leads to severe anemia and shortness of breath due to lack of oxygen being given to my body. Chronic Lung Disease.? </em><br />
<em>Ten year health outlook for inhalation of hydrocholoric, sulfuric acid, ferric chloride, alumiumm chloride and polystyrene is cancer of the stomach, the lungs, the kidney, liver or the bladder. Within this time period I have a pre-cancercous stomach lining, I have been treated for bladder cancer, what could be next? Lung cancer, Liver cancer due to all 21 medications I have to take over the years. Lupus attaching my kidneys?</em><br />
<em></em><br />
<em>Polycythenia- this is a slow growing cancer of the bone marrow.</em><br />
<em>Bone marrow issues? This is where the red blood cells are made. Hormone EPO ordered by kidneys to make more red blood cells. Need more blood cells for increase oxygen levels</em><br />
<em> Having undiagnoised lupus and the undiagnoised lupus blood disorder antiphospholipid and anticardiolipid hypercoagulative blood disorder since 2005. This eventually led to 3 blood clots and the placement of a Greenfield filter in my abdomen in 2009. My platelet counts have been high, but my hemoglobin, hemocrait, and red blood cells have all been , on and off, low. Bone marrow dysfunction has always been in the back of mine and my doctors minds. We just never pursued it as the blood work results kept changing. Mixed connective tissue OVERLAP disease made it very difficult to get the same blood work testing information more than once. I feel this was due to the many flares that were present at one time and reseeding the next as these are all part of the overlap MCT disease.. I was not actually diagnoised with this disease until 2009.</em><br />
<em></em><br />
<em>CH50-This is part of the complement (immune) system</em><br />
<em>mine is alttle high. Indicating Lupus-RA antibodies are active against me. For lupus the C3 and C4 are usually low. Mine being a little on the high side may indicate ulcerative colitis (already have) or and undiagnoised cancer.</em><br />
<em></em><br />
<em>Complement C4 is a little high. showing high inflamation in the body tissues and my immune system is in overdrive.</em><br />
<em></em><br />
<em>HgbA measures oxygen carrying hemoglobin in the blood. Mine is high.</em><br />
<em>Causes could be poor lung function, COPD, kidney cancer, liver cancer, emphysema, dehydration.</em><br />
<em></em><br />
<em>IgG Quant</em><br />
<em>Mine is low</em><br />
<em>This test measures the level of IgG immunoglobulin in the blood to fight infections. Low levels may be do to leukemia, myeloma, and we need more testing. Also taking immune suppressing methotrexate for RA. This may have some bearing on these results.</em><br />
<em></em><br />
<em>Last reflection:</em><br />
<em>Last complete IVIG Gamuglobin infusion was April 11, 2014. My body has built up antibodies to this form of treatment and does not allow me to complete infusions which I was taking every 4 weeks since May 5, 2012. I would wind up in the ER with horrific reaction issues. Without these altering gamagobulin circulating throughout my body, my immune system is not in check and is running rampid. None of my autoimmune diseases are under control and they are running rampid as well. Could this severe anemia be the result of an uncontrolled immune system. If I am not able to continue with the infusions what does the future hold for me?</em><br />
<em></em><br />
<em>goldengirl55-mylifeisasoapopera.</em><em><strong>blogspot.com<br /><cite></cite></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em><br />
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and many more. Based on my exeriences I offer advice, and share my experiences</cite>goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0tag:blogger.com,1999:blog-518866505760508124.post-22831698732783556262014-08-29T10:57:00.001-07:002014-08-29T10:57:41.943-07:00Miscellaneous Info you should know about. 8/28/14Miscellanous Info you should know about.<br />
<br />
Rooibos, also called "Red Tea," is a traditional South African herbal tea with a slightly sweet and nutty flavor. You can purchase the tea on line and it is caffeine free and contains many valuable antioxidants which help protect your body. It has a distinct flavor, and is a great alternative to coffee and black tea for that afternoon pick me up.<br />
<br />
Clarifying herbs to include in your diet:<br />
parsley<br />
sage<br />
rosemary<br />
thyme<br />
<br />
D-Mannose<br />
is a supplement to support your bladder. It is better than cranberry juice for managing and controling UTI issues.<br />
<br />
Honey and cinnamon combination can be used to control issues with high cholestrol, bad breath, skin infections, arthritis pain. Google for information and give it a try.<br />
<br />
Licorce root tea can break up mucus in the throat<br />
For digestion take DGL Licorce. 2 tablets with every meal.<br />
<br />
Boswellia and cumin herbs help with inflamation. <br />
See results in 2 weeks<br />
<br />
orange fruits, veggies, pineapples decrease pain. drink ginger and lemon water with fresh ginger to also help for pain of RA.<br />
Cut meat, dairy, coffee and use green tea for RA.<br />
<br />
<em>goldengirl55-mylifeisasoapopera.</em><em><strong>blogspot.com<br /><cite></cite></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em><br />
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and many more. Based on my exeriences I offer advice, and share my experiences</cite><br />
<br />goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0tag:blogger.com,1999:blog-518866505760508124.post-1688936834461439762014-08-28T10:22:00.002-07:002014-08-28T10:44:20.710-07:00Iron Infuse 8/26/14Iron Infuse went well.<br />
minor side effects<br />
loose stools, dizziness, severe headache but took excedrine migraine and it went away. later in the day cramping stomach, nausea. no redness, no rash, no itching, will return next tuesday 9/2/14 for another 200mg. of infuse over 15min. The name of the iron my hemotologist is using is call Venofer. It was a pleasure to have the infusion and leave an hour later. My IVIG gamugoblin infusions took 8 hours.<br />
<br />
Hemotologist was to pre medicate me with Decadron for allergic reaction side effects. I had already pre medicated myself with 40mg. of predisone at home so we canceled the decadron this time around.<br />
<br />
Arrived home was exhausted. Took a 2 hour nap. Still dealing with POTS and shortness of breath, this is leaving me exhausted most days.<br />
<br />
<em>goldengirl55-mylifeisasoapopera.</em><em><strong>blogspot.com<br /><cite></cite></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em><br />
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and many more. Based on my exeriences I offer advice, and share my experiences</cite>goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0tag:blogger.com,1999:blog-518866505760508124.post-90658044693885792302014-08-22T10:19:00.001-07:002014-08-22T10:19:16.444-07:00Hamatologist Bloodwork for Anemia...why 8/15/14Hemotology/Oncologist Appt.<br />
8/15/14<br />
<br />
Why if my iron is normal have I been anemic since 10/13/13? Why have my platelets increased so dramatically with each 6 week bloodwork and include an increase in size, yet decrease in plasma and red blood cell and oxygen. (pale cells).<br />
<br />
Over the past 12 years I have had a great deal of bloodwork done. I have kept everything to the dismay and complain to my husband who wants me to toss them. This is a great opportunity to look back into past bloodwork to see where treatments would have been beneficial, how the conditions have evolved since then. All this information will be very helpful to your doctor...that is why it is important to locate your medical records after each diagnositic testing. They are your records to view, any problems with the answers or it you do not understand anything consult your doctor ASAP. I now work with 12 doctors and I can be sure each one will receive what they need to treat me with alot less guess work.<br />
<br />
First test CBC/PLT?DIFF<br />
CMP Comprehensive metabolic panel<br />
Erythropoietin<br />
Ferritin<br />
Folate<br />
Haptoglobin<br />
Hemoglobin Electrophoresis<br />
Iron Saturation%<br />
LD (LDH)<br />
Occult Blood, stool<br />
Protein Electro Serum<br />
Reticulocyte Count<br />
Sed Rate<br />
TIBC <br />
TSH<br />
Urinalysis (will reflex a micro if leukocytes, occult blood, protein or nitrites are not withing normal limits.<br />
Vitamin B-12<br />
Direct antiglobulin$W/Refl anti C3, Anti IGG.............. to be continued.<br />
<br />
8/22/14<br />
<br />
My hemotology receeived the results of my blood work He finds that my iron saturation is 5%. Dr. wants me to start iv iron infusions on Turesday 8.26.14. This will be a test of 25mg. wait an hour and then 75mg. more to see if an allergic reaction is present. Should there be no reaction my schedule will be as follows:<br /> <br />My schedule will then be 200mg. a week for 5 weeks. till my iron is increased and stable.<br /> <br /> Reflect:<br />
<br />In speaking with the Gammagard support person I used the Gammagard 10% as an off label for CIDP. This product is for patients without an immune system that is working at optimal or if at all. I have an immune system, it is in high gear and attacking my body. For this reason I may have had the alaphalatic reaction. I would like to suggest the possibility of returning to the Gamunex-C, which is FDA approved for CIDP and use the ephinepherine shot as a control for the allergic reaction. This may sound crazy, but each patient is different and needs to rally for their own formula that will work for them.<br />
<br />
<em>goldengirl55-mylifeisasoapopera.</em><em><strong>blogspot.com<br /><cite></cite></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em><br />
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and many more. Based on my exeriences I offer advice, and share my experiences</cite>goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0tag:blogger.com,1999:blog-518866505760508124.post-90189756666473978282014-08-20T10:46:00.001-07:002014-08-20T10:46:54.328-07:00Best Laid Plans of Mice and Men 8/18/14- or Tell God your plan and he will laugh<br />
My Gammagard 10% IVIG infusions did not go as planned. I premedicated with 40 mg. of predisone two days before the infusions as per Dr. Nealon. On the first day of each infusion I was to take 20 mg. of predisone and the tylenol they give me at the infusion center. I did this. This infusion started around 9am and by 12 noon my chin was all read and my face was getting itchy. My blood pressure and pulse was accelerating as the day went on. By 230p my blood pressure was 167 or 87 and pulse was 101. I was continuing the ivig in hopes that this was nothing. But at 4pm my entire face was one of a red lobster, my face and body were starting to itch, the rash was trailing both sides of my neck and down to my chest. Infusion personel contacted Dr. Shustik and they were instructed to stop the infusion and take me to the ER. By time I entered the ER around 445pm. my throat was feeling very thick, my asthma coughing started and my blood pressure was 197 over 98 and pulse of 113. <br />
<br />
The OR doctor administered 125mg. of solumedrol into my port along with a shot of ephineparine since I could not have pepsin or benadryl. I remained under their watch until 8pm. Felt better, itching supsided, blood pressure was down and pulse was down. I was given a breathing treatment to help with my asthmatic coughing and was discharged.<br />
<br />
I have contacted my neurologist at the university to see how she wants to proceed or am I to stop the infusions completely. I also asked the question if it was possible to adminster the ephinepherine during the infusion time of 8 hours. No answer as of yet anxiety is killing me for the answer. This will have been my 3rd brand change. What do they say,,,,three strikes and you are out. I already discussed plasmapharesis with her at my last appointment. With my POTS autonomic diysfunction and lupus hypercoagulative blood disorder this is not an option.<br />
<br />
<em>goldengirl55-mylifeisasoapopera.</em><em><strong>blogspot.com<br /><cite></cite></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em><br />
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and many more. Based on my exeriences I offer advice, and share my experiences</cite><br />
<br />goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0tag:blogger.com,1999:blog-518866505760508124.post-2122395158872170242014-08-15T18:15:00.001-07:002014-08-27T07:56:36.245-07:00My Audience 8/15/14Audience- WOW<br />
<br />
Please feel free to leave comments, tell me your stories and health issues. Love to hear from you. Thanks for stopping by my blog.<br />
<br />
<table __gwtcellbasedwidgetimpldispatchingblur="true" __gwtcellbasedwidgetimpldispatchingfocus="true" cellspacing="0" class="GCUXF0KCP0">
<tbody>
<tr __gwt_row="0" __gwt_subrow="0" class="GCUXF0KCI-"><td class="GCUXF0KCH- GCUXF0KCJ- GCUXF0KCK-"><div __gwt_cell="cell-gwt-uid-907" style="outline-style: none;">
<div class="GCUXF0KCDO">
United States</div>
<br /></div>
</td><td class="GCUXF0KCH- GCUXF0KCJ- GCUXF0KCE0"><div __gwt_cell="cell-gwt-uid-908" style="outline-style: none;">
535</div>
</td></tr>
<tr __gwt_row="1" __gwt_subrow="0" class="GCUXF0KCI0"><td class="GCUXF0KCH- GCUXF0KCJ0 GCUXF0KCK-"><div __gwt_cell="cell-gwt-uid-907" style="outline-style: none;">
<div class="GCUXF0KCDO">
France</div>
<br /></div>
</td><td class="GCUXF0KCH- GCUXF0KCJ0 GCUXF0KCE0"><div __gwt_cell="cell-gwt-uid-908" style="outline-style: none;">
55</div>
</td></tr>
<tr __gwt_row="2" __gwt_subrow="0" class="GCUXF0KCI-"><td class="GCUXF0KCH- GCUXF0KCJ- GCUXF0KCK-"><div __gwt_cell="cell-gwt-uid-907" style="outline-style: none;">
<div class="GCUXF0KCDO">
Ukraine</div>
<br /></div>
</td><td class="GCUXF0KCH- GCUXF0KCJ- GCUXF0KCE0"><div __gwt_cell="cell-gwt-uid-908" style="outline-style: none;">
34</div>
</td></tr>
<tr __gwt_row="3" __gwt_subrow="0" class="GCUXF0KCI0"><td class="GCUXF0KCH- GCUXF0KCJ0 GCUXF0KCK-"><div __gwt_cell="cell-gwt-uid-907" style="outline-style: none;">
<div class="GCUXF0KCDO">
United Kingdom</div>
<br /></div>
</td><td class="GCUXF0KCH- GCUXF0KCJ0 GCUXF0KCE0"><div __gwt_cell="cell-gwt-uid-908" style="outline-style: none;">
9</div>
</td></tr>
<tr __gwt_row="4" __gwt_subrow="0" class="GCUXF0KCI-"><td class="GCUXF0KCH- GCUXF0KCJ- GCUXF0KCK-"><div __gwt_cell="cell-gwt-uid-907" style="outline-style: none;">
<div class="GCUXF0KCDO">
Italy</div>
<br /></div>
</td><td class="GCUXF0KCH- GCUXF0KCJ- GCUXF0KCE0"><div __gwt_cell="cell-gwt-uid-908" style="outline-style: none;">
6</div>
</td></tr>
<tr __gwt_row="5" __gwt_subrow="0" class="GCUXF0KCI0"><td class="GCUXF0KCH- GCUXF0KCJ0 GCUXF0KCK-"><div __gwt_cell="cell-gwt-uid-907" style="outline-style: none;">
<div class="GCUXF0KCDO">
Bangladesh</div>
<br /></div>
</td><td class="GCUXF0KCH- GCUXF0KCJ0 GCUXF0KCE0"><div __gwt_cell="cell-gwt-uid-908" style="outline-style: none;">
5</div>
</td></tr>
<tr __gwt_row="6" __gwt_subrow="0" class="GCUXF0KCI-"><td class="GCUXF0KCH- GCUXF0KCJ- GCUXF0KCK-"><div __gwt_cell="cell-gwt-uid-907" style="outline-style: none;">
<div class="GCUXF0KCDO">
Netherlands</div>
<br /></div>
</td><td class="GCUXF0KCH- GCUXF0KCJ- GCUXF0KCE0"><div __gwt_cell="cell-gwt-uid-908" style="outline-style: none;">
5</div>
</td></tr>
<tr __gwt_row="7" __gwt_subrow="0" class="GCUXF0KCI0"><td class="GCUXF0KCH- GCUXF0KCJ0 GCUXF0KCK-"><div __gwt_cell="cell-gwt-uid-907" style="outline-style: none;">
<div class="GCUXF0KCDO">
Ireland</div>
<br /></div>
</td><td class="GCUXF0KCH- GCUXF0KCJ0 GCUXF0KCE0"><div __gwt_cell="cell-gwt-uid-908" style="outline-style: none;">
4</div>
</td></tr>
<tr __gwt_row="8" __gwt_subrow="0" class="GCUXF0KCI-"><td class="GCUXF0KCH- GCUXF0KCJ- GCUXF0KCK-"><div __gwt_cell="cell-gwt-uid-907" style="outline-style: none;">
<div class="GCUXF0KCDO">
Canada</div>
<br /></div>
</td><td class="GCUXF0KCH- GCUXF0KCJ- GCUXF0KCE0"><div __gwt_cell="cell-gwt-uid-908" style="outline-style: none;">
3</div>
</td></tr>
<tr __gwt_row="9" __gwt_subrow="0" class="GCUXF0KCI0 GCUXF0KCP- GCUXF0KCC0"><td class="GCUXF0KCH- GCUXF0KCJ0 GCUXF0KCK- GCUXF0KCA0 GCUXF0KCD0 GCUXF0KCB0"><div __gwt_cell="cell-gwt-uid-907" style="outline-style: none;" tabindex="0">
<div class="GCUXF0KCDO">
Germany</div>
<br /></div>
</td><td class="GCUXF0KCH- GCUXF0KCJ0 GCUXF0KCE0 GCUXF0KCA0 GCUXF0KCD0"><div __gwt_cell="cell-gwt-uid-908" style="outline-style: none;">
3<br />
<br />
<table __gwtcellbasedwidgetimpldispatchingblur="true" __gwtcellbasedwidgetimpldispatchingfocus="true" cellspacing="0" class="GCUXF0KCP0">
<tbody>
<tr __gwt_row="0" __gwt_subrow="0" class="GCUXF0KCI-"><td class="GCUXF0KCH- GCUXF0KCJ- GCUXF0KCK-"><div __gwt_cell="cell-gwt-uid-253" style="outline-style: none;">
<div class="GCUXF0KCDO">
United States</div>
<br /></div>
</td><td class="GCUXF0KCH- GCUXF0KCJ- GCUXF0KCE0"><div __gwt_cell="cell-gwt-uid-254" style="outline-style: none;">
562</div>
</td></tr>
<tr __gwt_row="1" __gwt_subrow="0" class="GCUXF0KCI0"><td class="GCUXF0KCH- GCUXF0KCJ0 GCUXF0KCK-"><div __gwt_cell="cell-gwt-uid-253" style="outline-style: none;">
<div class="GCUXF0KCDO">
France</div>
<br /></div>
</td><td class="GCUXF0KCH- GCUXF0KCJ0 GCUXF0KCE0"><div __gwt_cell="cell-gwt-uid-254" style="outline-style: none;">
50</div>
</td></tr>
<tr __gwt_row="2" __gwt_subrow="0" class="GCUXF0KCI-"><td class="GCUXF0KCH- GCUXF0KCJ- GCUXF0KCK-"><div __gwt_cell="cell-gwt-uid-253" style="outline-style: none;">
<div class="GCUXF0KCDO">
United Kingdom</div>
<br /></div>
</td><td class="GCUXF0KCH- GCUXF0KCJ- GCUXF0KCE0"><div __gwt_cell="cell-gwt-uid-254" style="outline-style: none;">
13</div>
</td></tr>
<tr __gwt_row="3" __gwt_subrow="0" class="GCUXF0KCI0"><td class="GCUXF0KCH- GCUXF0KCJ0 GCUXF0KCK-"><div __gwt_cell="cell-gwt-uid-253" style="outline-style: none;">
<div class="GCUXF0KCDO">
Taiwan</div>
<br /></div>
</td><td class="GCUXF0KCH- GCUXF0KCJ0 GCUXF0KCE0"><div __gwt_cell="cell-gwt-uid-254" style="outline-style: none;">
13</div>
</td></tr>
<tr __gwt_row="4" __gwt_subrow="0" class="GCUXF0KCI-"><td class="GCUXF0KCH- GCUXF0KCJ- GCUXF0KCK-"><div __gwt_cell="cell-gwt-uid-253" style="outline-style: none;">
<div class="GCUXF0KCDO">
Australia</div>
<br /></div>
</td><td class="GCUXF0KCH- GCUXF0KCJ- GCUXF0KCE0"><div __gwt_cell="cell-gwt-uid-254" style="outline-style: none;">
10</div>
</td></tr>
<tr __gwt_row="5" __gwt_subrow="0" class="GCUXF0KCI0"><td class="GCUXF0KCH- GCUXF0KCJ0 GCUXF0KCK-"><div __gwt_cell="cell-gwt-uid-253" style="outline-style: none;">
<div class="GCUXF0KCDO">
Ukraine</div>
<br /></div>
</td><td class="GCUXF0KCH- GCUXF0KCJ0 GCUXF0KCE0"><div __gwt_cell="cell-gwt-uid-254" style="outline-style: none;">
9</div>
</td></tr>
<tr __gwt_row="6" __gwt_subrow="0" class="GCUXF0KCI-"><td class="GCUXF0KCH- GCUXF0KCJ- GCUXF0KCK-"><div __gwt_cell="cell-gwt-uid-253" style="outline-style: none;">
<div class="GCUXF0KCDO">
Canada</div>
<br /></div>
</td><td class="GCUXF0KCH- GCUXF0KCJ- GCUXF0KCE0"><div __gwt_cell="cell-gwt-uid-254" style="outline-style: none;">
8</div>
</td></tr>
<tr __gwt_row="7" __gwt_subrow="0" class="GCUXF0KCI0"><td class="GCUXF0KCH- GCUXF0KCJ0 GCUXF0KCK-"><div __gwt_cell="cell-gwt-uid-253" style="outline-style: none;">
<div class="GCUXF0KCDO">
Germany</div>
<br /></div>
</td><td class="GCUXF0KCH- GCUXF0KCJ0 GCUXF0KCE0"><div __gwt_cell="cell-gwt-uid-254" style="outline-style: none;">
5</div>
</td></tr>
<tr __gwt_row="8" __gwt_subrow="0" class="GCUXF0KCI- GCUXF0KCP- GCUXF0KCC0"><td class="GCUXF0KCH- GCUXF0KCJ- GCUXF0KCK- GCUXF0KCA0 GCUXF0KCD0 GCUXF0KCB0"><div __gwt_cell="cell-gwt-uid-253" style="outline-style: none;" tabindex="0">
<div class="GCUXF0KCDO">
Ireland</div>
<br /></div>
</td><td class="GCUXF0KCH- GCUXF0KCJ- GCUXF0KCE0 GCUXF0KCA0 GCUXF0KCD0"><div __gwt_cell="cell-gwt-uid-254" style="outline-style: none;">
5</div>
</td></tr>
<tr __gwt_row="9" __gwt_subrow="0" class="GCUXF0KCI0"><td class="GCUXF0KCH- GCUXF0KCJ0 GCUXF0KCK-"><div __gwt_cell="cell-gwt-uid-253" style="outline-style: none;">
<div class="GCUXF0KCDO">
Kenya</div>
<br /></div>
</td><td class="GCUXF0KCH- GCUXF0KCJ0 GCUXF0KCE0"><div __gwt_cell="cell-gwt-uid-254" style="outline-style: none;">
5</div>
</td></tr>
</tbody>
</table>
</div>
</td></tr>
</tbody>
</table>
goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0tag:blogger.com,1999:blog-518866505760508124.post-65238604050897545312014-08-15T17:21:00.000-07:002014-08-15T17:21:53.298-07:00Myanthenia Gravis Bloodwork 8/13/14<br />
<br />
Neurologist Bloodwork<br />
<br />
Shopping for Myasthenia Gravis<br />
<br />
In digging deeper into my neurology bloodwork for answers on Myasthenia Gravis. An autoimmune disease that has many overlapping symptoms. Many times confused with CIDP. Fortunately, the treatment for both is ivig infusions. I am confident once I start my ivig infusions this disease will once again be under control. For now the symptoms are debilatating weakness which is waxing and weaning of my muscles and extremeties as well as shortness of breath, high blood pressure, bowel and bladder issues and poor digestion. I am also experiencing ocular eye problems. Double and blurred vision is annoying . I am having difficulty swallowing, my hand grip is weak and when I go to rise from a sitting position it is almost impossible. Walking up steps is difficult and frustrating as the muscles in my legs do not want to work. The following bloodwork should give us the answers we seek. <br />
<br />
Reflect:<br />
It is esssential to know that when seeking answers through more consise bloodwork, this bloodwork may not be covered by your insusrance coverage. I would call your insurance company and make sure it is covered before having the blood drawn. Also be aware these tests can take up to 10 days to get the results so be patient. One more thing, your blood drawing company..ie..labcorp or althena send this blood out for diagnostic results. In my case, labcorp drew the first test, but does not draw the 2nd test. For this reason I need to wait on this test. I am told someone from Athena will call me and I can go to hospital and have blood drawn again or they will come to my home to draw the blood. The blood then gets sent to Athena for results and not labcorp. Navigating the healthcare system can be a nightmare.<br />
<br />
VGCC Antibody (anti-lems)<br />
<br />
Results will indicate if I have small cell lung cancer<br />
<br />
Anti-Musk Antibody<br />
<br />
15% of myasthenia Gravis patients will test positive when the AChR testing is negative.<br />
<br />
<br />
<em>goldengirl55-mylifeisasoapopera.</em><em><strong>blogspot.com<br /><cite></cite></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em><br />
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and the number is growing. . Based on my experiences I offer advice, and share my experiences.</cite><br />
<br />goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0tag:blogger.com,1999:blog-518866505760508124.post-74408139992765691752014-08-15T17:17:00.000-07:002014-08-15T17:17:05.590-07:00Kidney Function Testing 8/14/14Kidney GFR is 42. (lowest it has ever been).<br />
<br />
<div class="paragraph" sizcache="3" sizset="61">
<div sizcache="3" sizset="61">
A magnesium test<br />
is used to measure the level of
magnesium in the blood (or sometimes urine). Abnormal levels of magnesium are
most frequently seen in conditions that cause impaired absorption in the
intestines. I know I already have a malabsorption problem due to my scerlederma. Magnesium levels may be checked as part of an evaluation of the
severity of <a href="http://labtestsonline.org/understanding/conditions/kidney">kidney disease </a> and may help in the
diagnosis of gastrointestinal disorders.<br />
</div>
</div>
C3 and C4 Complement Testing<br />
<br />
This test is ordered for the purpose of looking for deficiencies in the complement system. Help to diagnose the reason for recurrent infections. Monitoring autoimmune diseases such as lupus, and RA. This test is also used to monitor kidney disorders and vasculitis. <br />
<br />
urine protein creatinine ratio test<br />
<div class="article_title">
Interpreting the urine protein/creatinine ratio <br />
<br />
The protein/creatinine ratio is used to estimate protein in the urine and at what rate it is excreted. . <br />
<br />
DNA (DS) Antibody<br />
ordered after receiving a positive ANA test and clinical signs show the possibilty of lupus The anti-dsDNA test is used in a diagnosis Lupus. <br />
<br />
In my lab work of 2007 this test result was normal. It was not until a university rhumotologist ordered bloodwork in 2009 to dig deeper and confirm I had Lupus. Testing for DRVVT screening was very high . My anticardiolipin bloodwork was also high. Confirming my antiphospholipid anticardiolipid hypercoagulative antibody syndrome. I had a total of 3 blood clots at this point and was given the decision to have a green filter placed in my abdomen, which I did. I was also showing a Beta-2 Glycoprotein I, IgM result of high positive. My speckled test for sjorgren's, lupus, scerlederma, polymyositis and RA proved positive as well for mixed connective tissue disease. Now I had the whole package. Confirmed results and it only took 7 years for a diagnosis.<br />
<br />
Reflect:<br />
It is my experience to not give up your quest for a proper diagnosis. The best thing you can do is to keep trying, don't give up. Find someone who will listen to you and help you find the answers you seek. Even if you need to leave the comfort of your area. Don't ever let anyone ever tell you its all in your head, or you are nuts and need physciatric help. If you give into this kind of relationship with a professional you will only loose sight of your fight and become depressed. Your self esteem will take a nose five and no one has the right to make you feel that way. It is your body, If you feel something is wrong, then something is wrong. Listen to your gut, listen to your body, and don't take NO for an answer. </div>
<br />
<div class="paragraph" sizcache="3" sizset="98">
<div sizcache="3" sizset="101">
<em>goldengirl55-mylifeisasoapopera.</em><em><strong>blogspot.com<br /><cite></cite></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em><br />
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and the number is growing. . Based on my exeriences I offer advice, and share my experiences</cite><br />
</div>
</div>
goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0tag:blogger.com,1999:blog-518866505760508124.post-53261170826550727912014-08-15T17:15:00.000-07:002014-08-15T17:21:15.202-07:00myasthenia Gravis 8/5/14Myasthenia Gravis<br />
<br />
Undetected autoimmune disease. Undetected because I was having IVIG infusions every 4 weeks. The infusions have stopped since 4.29.14 due to reaction to Gamunex-C. Now the next session is with Gammagard 10% and to start of August 18th week of. It takes 8 hours a day for 5 days every 4 weeks to have this blood product. I am hoping I can tolerate this new brand. It has been 2 years since starting the Gamunex-C. to the day that I had a reaction. My body built up antibodies to this blood product. I only hope I have another 2 years of infusions with Gammagard 10% before my body builds up antibodies to this blood product.......to be continued.<br />
<br />
<div class="ModDNNHTMLC" id="dnn_ctr379_ModuleContent">
<div class="Normal" id="dnn_ctr379_HtmlModule_lblContent">
Myasthenia Gravis (pronounced My-as-theen-ee-a Grav-us) comes from the Greek
and Latin words meaning "grave muscular weakness." The most common form of MG is
a chronic autoimmune neuromuscular disorder that is characterized by fluctuating
weakness of the voluntary muscle groups. The prevalence of MG in the United
States is estimated to be about 20/100,000 population. However, MG is probably
under diagnosed and the prevalence may be higher. Myasthenia Gravis occurs in
all races, both genders, and at any age. MG is not thought to be directly
inherited nor is it contagious. It does occasionally occur in more than one
member of the same family.<br />
The voluntary muscles of the entire body are controlled by nerve impulses
that arise in the brain. These nerve impulses travel down the nerves to the
place where the nerves meet the muscle fibers. Nerve fibers do not actually
connect with muscle fibers. There is a space between the nerve ending and muscle
fiber; this space is called the neuromuscular junction.<br />
When the nerve impulse originating in the brain arrives at the nerve ending,
it releases a chemical called acetylcholine. Acetylcholine travels across the
space to the muscle fiber side of the neuromuscular junction where it attaches
to many receptor sites. The muscle contracts when enough of the receptor sites
have been activated by the acetylcholine. In MG, there can be as much as an 80%
reduction in the number of these receptor sites. The reduction in the number of
receptor sites is caused by an antibody that destroys or blocks the receptor
site.<br />
Antibodies are proteins that play an important role in the immune system.
They are normally directed at foreign proteins called antigens that attack the
body. Such foreign proteins include bacteria and viruses. Antibodies help the
body to protect itself from these foreign proteins. For reasons not well
understood, the immune system of the person with MG makes antibodies against the
receptor sites of the neuromuscular junction. Abnormal antibodies can be
measured in the blood of many people with MG. The antibodies destroy the
receptor sites more rapidly than the body can replace them. Muscle weakness
occurs when acetylcholine cannot activate enough receptor sites at the
neuromuscular junction.</div>
</div>
<ul>
<em>goldengirl55-mylifeisasoapopera.</em><em><strong>blogspot.com<br /><cite></cite></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em><br />
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and the number is growing. . Based on my experiences I offer advice, and share my experiences</cite></ul>
goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com2tag:blogger.com,1999:blog-518866505760508124.post-37040882464378702022014-08-15T15:09:00.000-07:002014-08-15T15:09:35.927-07:00My Head is Spinning 8/15/14 Thyroid Disorder<br />
Today is Friday, August 15, 2014 Head is spinning.<br />
<br />
Forgive me my lapse in spelling, punctuations, and sentence structure. Cognitive dysfunction caused by my diseases is to blame. My mind does not always work and it takes too long for my nervous system to reboot my brain/memory..<br />
<br />
I have spent this entire week visiting my doctors. Each one wants new bloodwork to be completed. Each one seems to be dealing with their area of expertise, which is why I have appointments with them. I just wish instead of dividing myself among 5 different doctors I could just see one and take care of everything at once. They only want certain pieces of me. PCP is treating me for strep and thyroid disorder, my Neurologist is investigating the possibility of myasthenia gravis, all of which I have the symptoms of , but this could also be my CIDP, Nephorologist, is addressing my kidney function which has slowly been declining since January. My GFR is currently 42, which is the lowest it has ever been and is characterized as chronic kidney (stage II) disease. Is this caused from my lupus, or side effect of my ivig's of the past? My Hemotologist.is currently addressing the fact that I have been anemic since October of 2013, and continue to be... why? I am an enigma to my doctors. I think they see me coming and just laugh. I have so many health issues and insurance only allows us 15 minutes per appointment. I have to say, my doctors have all been indulging me with longer appointments and I am grateful for this. How can one person be so ill. We have encountered alot of overlapping in symptoms. Issues I was dealing with in 2005, or 2007 are now coming into light again. I feel it is due to stopping my ivig infusions. It is not like I had a choice, an allergic reaction to the Gamunex-C sends me to the ER with anaphalatic shock. It to two years for my body to build up antibodies to the blood product to the point of allergic sensitivities. If it were up to me I would continue no matter what the consequences. The ivig infusions helped me so much. Next week I will be restarting them again with a new brand. This brand is call Gammagard 10% human blood product. From what I have researched this product does not contain sodium or carbohydrates. I will be premedicating with 40mg of predisone 2 days before my infusions, and then 20mg. daily thruough out my infusion week. My rate of infusions is 2 grams per hour and this makes for a long 8 hour day. This precaution is due to my high sensitivity and reaction of Gamunex-C in May of 2014. The last full week infusion I had was in April of 2014. I have slowly been falling apart ever since. Returning to square one. My pain is exasperated beyond belief and I am exstremely weak in my extremities. . But health issues that were under control or not evident due to the ivig treatments are now present and being investigated. That is what all this blood work is for. Anytime I have what I call surface bloodwork done it comes out normal. I stressed to my doctors they need to dig deeper in my blood to find the answers they seek.<br />
<br />
My preliminary thyroid testing has come back low. This meaning I have a hypo thyroidism condition and all its symptoms that go with it. I was tested in 2010. The normal procedure is to test the TSH. Mine came back normal and so nothing more was done. Again the TSH came back normal, but in researching thyroid disorders this is the realm of reality the doctors use. Unfortunately, many patients are never diagnoised when they in fact may have a thyroid disorder. <br />
My PCP orders the following for my thyroid.<br />
<br />
Thyroglobulin Autoantibody<br />
This bloodwork is for a cancer tumor marker. Also used to evaluate the treatment progress during thyroid cancer. Most common types of cncer is papillary and folllicular thyroid cancer. Cancer will show up with this test thru elevated levels in the blood. It would also so any re-occurance of cancer if you were treated in the past.<br />
<br />
Thyroid Peroxidase Autoantibody<br />
This is an enzyme that is made in the thyroid and is important to the production of the thyroid hormone which powers every function in the body. Low hypothyroid is usually caused by the immune system attacking the thyroid and its ability to make thyroid hormones, as in Hashimoto Thyroidititis.<br />
<br />
Thyroid Stimulating Hormone or TSH<br />
This is the standard test for thyroid disorders. If it is normal you doctor may not go any further. However, some doctors do order T4 along with TSH. My T4 was low. In researching my previous bloodwork these two tests were done. I also wanted a T3 testing which is not always ordered. My PCP knows me and my health issues and was only too happy to accomodate my request. <br />
<br />
A T3 test is ordered to find the location of your thyroid disorder. Is it the hypothalmus located just below your jugguler in your neck or your pituitary gland in your brain.<br />
Non-thyroidal Illness Syndrome (NTIS), and Low T3 Syndrome is what the medical community referr to a high TSH and low T4 and T3 combination.<br />
A low T3 will indicate that your problem is not with your thyroid, but with your pituitary gland. Patients (40%) who have Hashimoto disease fall into this category. Biopsy is the best for a diagnois, but due to the location of thepituitarygland and obvious reasons that is problematic. So diagnoising a problem like this is tricky and is going to lead to more testing. Others feel that a low or high T3 may be linked entirely to the amount of inflammation in your body. This syndrome can be both acutely life threatening and chronic.<br />
<br />
<em>goldengirl55-mylifeisasoapopera.</em><em><strong>blogspot.com<br /><cite></cite></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em><br />
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and the number is growing. . Based on my exeriences I give advice, and share my experiences</cite><br />
<br />goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0tag:blogger.com,1999:blog-518866505760508124.post-32045945388472635512014-08-12T16:48:00.002-07:002014-08-15T17:16:29.350-07:00Another Diagnosis...8/8/14<br />
HYPOTHYROIDISM<br />
Another diagnosis......... have a feeling this one is going to change my life into a<br />
very difficult time.<br />
<br />
Bloodwork has been received. My TSH is normal and my T4 (which is the amount of hormones which actually circulate in your blood is 36 which is flagged for being low. Dr called wants to make an appointment with me to discuss all my bloodwork in detail.<br />
<br />
In my research I know there are seven things that can signal a thyroid disorder. The T4, T3, TSH, pituatary gland, thyroid, thalmus, and tumors (either cancerous or benign). More blood work needs to be done. Not the usual surface bloodwork, but diving deep into my blood. These tests are to be taken next week when I resume IVIG infusions.<br />
<br />
The bloodwork is listed as follows:<br />
<br />
Thyroglobulin anutoantibody<br />
Thyroid Peroxidase autoantibody<br />
Thyroid Stimulating Hormone (TSH)<br />
T3 Free<br />
<br />
These tests will probably take 5 to 10 days to be returned with results as they send them out to be processed. Now I just have to try to be patient.<br />
<br />
to be continued................<br />
<em>goldengirl55-mylifeisasoapopera.</em><em><strong>blogspot.com<br /><cite></cite></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em><br />
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and many more. Based on my exeriences I offer advice, and share my experiences</cite><br />
<br />goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0tag:blogger.com,1999:blog-518866505760508124.post-20432143079473159762014-08-09T14:07:00.000-07:002014-08-15T17:12:01.267-07:00Diary August 2014 ( page 4)Diary (August 2014) page 4<br />
<br />
I continue to make accomodations for my changing symptoms. So cold, everyone else in the house is comfortable. I am freezing to the bone. Feet and hands are painful. Nothing I do will get me warm. My entire body is in 8-9 pain level. Every joint and bone, and muscle hurts when resting or in use. My wrist and fingers feel like they are sprained. <br />
<br />
Body itching constantly, especially my scalp and arms, forarms, biceps, neck, and face. Skin feels rough, scaly, and bumpy. Not sure what is going on. Moisturizing does not help. This has been going on since July. <br />
<br />
It is difficult to move my body. Pain is a constant, but now it is also stiffness of muscles, joints, weakness. Slow moving upon rising, walking. Pots is still an issue. My pulse rate upon siting or standing alone is 98. Upon walking and an activiity can reach as high as 143. I feel anxiety and symptoms of panic attacks which have not been present since 2002. <br />
<br />
I seem to have trouble breathing. Just sitting, all of a sudden I can loose my breath. Like someone is shutting a window. I am continuing with my inhaler, nasal sprays. My sinusitis seems to have healed. However, I was exposed to strep infection this past week. Not systematic yet, time will tell. With the high temperatures and humidity I am again using my nebulizer treatments 4 times a day. I mailed a CD to my pulmonologist. This is a ct of my lungs he had me complete by in May. They prescribed a PE protocol. I just wanted the doctor to examine the CD and make sure the radiologist did not miss anything. Unfortunately, I have on many occassions had a radiologist read the film only reporting on what was scripted to be looked at. If anything else was present they did not put that in the report. My second blood clot was found this way. CT taken was for gastro issues in '07. Never reported on ovarian vein thrombis that was also seen.<br />
<br />
August so far has been very demanding. Family social events, catching up on doctor appts. On these days I have been taking 40 mg. of predisone instead of my daily 5mg. It really seems to help with the pain and my mobility. It is also giving me tons of energy as I am completely drained and feel like death warmed over. I started taking monthly B-12 shots with my PCP but they are not helping. <br />
<br />
<em>goldengirl55-mylifeisasoapopera.</em><em><strong>blogspot.com<br /><cite></cite></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em><br />
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and many more. Based on my exeriences I offer advice, and share my experiences</cite><br />
<br />
<br />
<br />
<br />goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0tag:blogger.com,1999:blog-518866505760508124.post-13656478541111222972014-08-07T14:13:00.000-07:002014-08-07T14:13:44.770-07:00page 3 Diary 8/1/14Diary (con'd) page 3<br />
<br />
6/19/14<br />
Bladder dysfuction all day. great pressure on bladder to void. only small amout or nothing at all. These symptoms along with constant incureable UTIs were the symptoms of my bladder cancer in 2011. Had my 6 week bloodwork done today. Everything is marked with abnormal high and lows. still anemic. hemoglobin is declining and has been since May. I point this out, but no one seems worried. It is just the way the different labs gauge results. . Need to go below 10.0. before you start to worry. My last hemoglobin reading was 10.2, then 10.4, then 10.0. Contacted my hemotologist, he is keeping an eye on it. Reflect. Is my bloodwork effected because of loss of ivig infusions. Is something going on with my bone marrow. This was an issue in 2005.<br />
Arms, chest, neck all feel bumpy, scaly and strange. Is this scerlederma, sjorgens, another autoimmune dsease once hidden, undercontrol coming to light?<br />
Nails are growing out into points. nails showing no pink, but large white areas. SOB continues.Is this a circulation problem? Dr. Brau wants me to have ct of my lungs, checking for PE.<br />
<br />
6/20/14<br />
Humidity is down, temperature is down, my energy level is back and feel like my old self...I can function. My eyes are tired and double vision has gone from my computer screen to my tv as I watch my evening programs. I place my right hand over my right eye. I can see so clearly. My vision is crisp and clear as if windex window cleaner was used to wash it. I do the same to the left eye, same conclusion. I take the hand away and double vision returns. ( I went to ER for this in 2007, they never found anything). Seems to come and go. I made an appointment to see my opthomologist and she agrees I have true double vision. My glasses can be changed to accomodate this with prisms. I never heard of this before and since my prism level is just starting out and is small, she tells me it will continue to get worse. I feel I will wait till the conditon gets worse before buying a new pair of lenses. I just purchased the ones I have a year ago.<br />
<br />
Should and right hip pain as well as lower back pain continue. Making it difficult to walk without the stability of my cane. I take aleeve for my back pain and use voltaren on my shoulder and hip area. My entire body is itching. My scalp all the way to my toes. My skin also looks like it is motling even though I drink tons of water.<br />
<br />
6/21/14<br />
My lupus butterfly rash is present today, must be in some kind of flare. Skin bumpy as well may be due to lupus issue. Without ivig controling my diseases, who knows what is causing it. I don't know where one autoimmune disease starts and the other stops. Reflect. The predisone probably kept it in check, but with my titrating to 2.5mg. its not helping anymore and all kinds of symptoms and issues are presenting themselves. It's been 12 years since my inhalation accident something could be present now that was not discovered as of yet.<br />
<br />
6/22/14<br />
Eyes continue to water heavily. I notice the left eye pain is gone today, but also notice my left eye is gving me foggy vision. It is like I am looking thru a dirty glass. Eyes feel stuck together in the morning and difficult to open, painfully dry. Use restasis, but still have pain, especially in left eye. Dry mouth, and meds getting caught in throat.<br />
My gastroenterologist wants me to come in for another endoscopy and colonoscopy. I spoke with my PCP and in light of my POTS (walking tachycardia and SOB, etc...) it probably would not be a good idea. I put it on the back burner.<br />
<br />
I spoke with my cardiologist and he suggested we increase my Toprol medication from 25mg. 2 x a day to 50mg 2 x a day. I would come in to be fitted with a heart monitor to observe how the medication was working. The medication increase made me feel like there was a tug of war going on in my body. I became sick and nauseated and could not continue with the doseage increase. I returned to the 25 mg 2 x a day dose. I felt much better. In follow up he said my heart was fine, there was nothing he could do for the walking tachycardia.<br />
<br />
6/24/14<br />
awoke still with itchy bumpy skin textrue on my arms, face and chest. It seems to be spreading. My face, minus my forehead became extremely red and hot. My hair is continueing to thin, but I am loosing my eyelashes too. why?<br />
<br />
6/25/14<br />
Saw Univeristy Neurologist. She suggests I continue with the IVIG infusions. Using a different brand since they have been so beneficial to me. Let's not give up just yet. I start ivig infusions again the week of 8/11/14. We will be using the Gammagard 10%. I am to premed with predisone 40 mg for 2 days before the infusions. predisone 20mg. with tylenol the morning of each infusion and then go to 10mg. and excedrine for the reaction week after infusions. Titrating back to 5mg. there after until the next infusion date. On 4-11-14 I was sent to ER with allergic reaction to benadryl. On 5-6-14 I was sent back to ER for allergic reaction to Gammunex-c.<br />
<br />
6/28/14<br />
Eyes weeping, creepy crawley sensations on my right hand and legs. Do not see any ants, etc.. just feel them. I remember this sensation from 2008.<br />
Right hand use feels painful like carpel tunnel pain, especially when turning the sterring wheel while driving. Low back pain continues as does shoulder pain. I am experiencing temple, forehead, right ear pain. Stopped methotrexate for now. Infections 3 of the UTI, and fungal infection on my toes and fingers, and sinusitis. Will restart after infections are gone.<br />
<br />
6/30/14<br />
start macrobid antibiotic. Severe loose bowels continue for several hours. Took immodium. Afraid to eat anything. <br />
<br />
<em>goldengirl55-mylifeisasoapopera.</em><em><strong>blogspot.com<br /><cite></cite></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em><br />
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and many more. Based on my exeriences I give advice, and share my experiences</cite>goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0tag:blogger.com,1999:blog-518866505760508124.post-21058170897610862482014-08-05T11:11:00.000-07:002014-08-05T11:11:20.016-07:00Diary page 2 8/01/14<br />
Diary (cont'd) pape 2<br />
6/14/14<br />
awoke with headach, lower back pain, shoulder and rotor cuff area is painful. eyes burn, super dry, mouth super dry, drinking tons of water. have to use ladies room every 5 minutes. If I wait I just have intense pain the the bladder and right kidney. Need to see urologist, UTI ?<br />
<br />
6/16/14<br />
up multiple times during the night. sleep sporatic. stabbing chest pain, SOB more so today. burning esphogus and stomach. Gastro issues flaring. ankles throbbing. Not able to eat, feel full after 2 bites.<br />
Feel so tired even with predisone. Taking 2.5 amd and 2.5 pm. Not enough. body still itchy, stomach nausea and pain. awoke to blood dripping from my right nostril. Reflect: dry mucus areas, sjorgens.<br />
knee pain front patella and back of knee-shooting, stabbing pain radiates up back of thigh and down the back of the calf. When standing the back of my knee is only effected with pinching electrical shock, bee sting like sensations. I need to sit down. Making appt with orthopedic doctor. My guess is small baker's cyst. knees are crumbling.<br />
<br />
6/17/14<br />
slight headache, dry coughing, nausea after eating. Migraine by the afternoon with high humidity day of 91 degrees. Dry raspy deep chest coughting. use breathing treatment. cancell all appts. eyes burning and dry, watering weepy not able to wear eye makeup. lymph nodes swollen on right side under right ear which has been giving me ear pain for last 3 weeks. This is the ear I had the typanoplasty done by in '03. Nose continues to bleed. Face itchy, especially at temples. difficulty swalling pills getting stuck all the time. skin texture is becoming bumpy, like I have constant goose bumps. I can feel lthem all over my back, shoulders, chest, neck.<br />
hands swollen, dif to close, eyes watering. using restasis am and pm. using netti pot, nasal bleeding still going on. Report to PCP, does not seem worried.<br />
Evening and 10pm. 96 degrees outside. headache pain over left eye. peak flow down to 325. use nebulizer and remain in bedroom with air conditioning. Left to go downstairs for something to eat. I could not breath. blood pressure soars and puls is tachy at 125. I have 10 min. to get back upstairs to air conditions before I need to sit down. Peak flow down to 300. I go to the ER with a peak flow reading of 225.<br />
<br />
6/18/14<br />
I have become a recluse in my air conditioned bedroom.<br />
Feeling better, less edema and bloating under my chin, neck thickness is gone. I am taking 2.5mg to feel better, but at the expense of my pain level. Predisone of 10 mg. was not really helping the pain. I would need 20-60 to really feel well and pain under control on a daily basis. I know this is not possible. Too toxic an amount, adrenals will suffer, kidney problems and high risk of diabetes is not something I need. Control pain in the am with aleeve, and the pm with vicodin to function. Still taking 1.0ml of methotrexate weekly. I have ben without Gammunex-c since April. My body is reverting back to square one and I am afrain I will not be able to return to ivig infusions to control my pain and recapture part of my mobility. Gastroparesis is gving me problems without the controling benefits of Gammunex-c. Small meals of one or two bites make me feel nauseated. I have difficulty finishing any meal. I take zofran 4mg. as needed to control the nausea. My medications are skipped due to the nausea. Lower back pain continues as do the headaches. These are an everyday occurance.<br />
<br />
6/19/14<br />
So tired. Feeling nauseated. Nausea just hits me in my core. I can not function. All I can do is take the zofran, try to sleep and wait for the feeling to pass.<br />
<br />
6/20/14<br />
Pulmonologist feels my headaches are due to a sinusitis infection. wants me to use mucinex. Need to check this out against listing for benedryl allergies. Prescribes nasonex instead of the usual antibiotics. Last time they got caught in my throat and were just effervesing. in my esophogus. I needed to go to ER to be sure I did not have a hole in my esphogus. Penicillian and Keflex are not an option, they are on my allergy list. The netti pot should help with the bloody nasal discharge, and I return in followup in 2 months.<br />
<br />
<em>goldengirl55-mylifeisasoapopera.</em><em><strong>blogspot.com<br /><cite></cite></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em><br />
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and many more. Based on my exeriences I give advice, and share my experiences</cite><br />
.goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0tag:blogger.com,1999:blog-518866505760508124.post-14827498057345527032014-08-04T12:07:00.001-07:002014-08-04T12:07:36.882-07:00Diary since 4/23/14 Soap Opera ContinuesMy last full 5 days of ivig infusions was with Gamunex-c on April 7-12 of 2014.<br />
<br />
My pain level since has been eye opening. With having no real medications to control my symptoms, each of my autoimmune diseases is out of control. They have made themselves known to me big time and are having one big free for all voyage thru my body.<br />
<br />
Below is my pain diary:<br />
<br />
4/23/14<br />
today have energy. by late evening I see double vision with my computer screen. Enlarge to 125% due to blurry vision as well.<br />
body so cold, layer of clothing, wool sweaters, can't get warm<br />
<br />
4/24/14<br />
bowel and stomach problems today. lactose issue?<br />
last 2 days only tool 12.5mg of predisone. weaning myself back down to 10mg and then 5 mg. worried about adrenals, kidneys due to bloodwork results. entire first page of CBC was abnormal. Think I may feel better on lower dose. Feel so bloated and swollen.<br />
<br />
new bloodwork shows Vit. D is 19.1 still very low. malabsorption problem with intestines? PCP scripts I take 10,000 a day.<br />
Still anemic, have been since Oct of 2013. Still dealing with walking tachycardia (POTS) issues. very debilatating. Tremors in left hand more so than right hand. Becoming more shakey with use. annoying. Use hands to hold something can't control my hand unless I press hard on to what I am holding. sometimes this helps.Difficulty holding my camera phone for picture. picture is out of focus due to tremors.<br />
<br />
4/25/14<br />
Right should socket so painful 7-8 with use. right shoulder also hurting but more so on a constant basis. fingertips so itchy, biting them to help calm the itching. right palm intense itching as well. Met with infusion center. INR 2.5 which is good. flush done every Tuesday with 2 vials of saline solution since I am allergic to heparin.<br />
<br />
Temperature outside is 72 degrees, cool breeze in the morning. showers are expected on and off. so much more energy today without humidity bearing down I don't feel so washed out.<br />
<br />
5/3/14<br />
Monitoring my blood pressure upon waking and siting in bed my pulse is 65 and blood pressure is 110 over 70.<br />
By 2pm. I am up for lunch and my blood pressure and pulse are rising. I have exactly 10 minutes to prepare my lunch before I need to sit down. My pulse is 110. I have SOB, cold sweat, heart palpations, dizzy, light headed. I sit down and monitor my pulse for 20 minutes. It is now back down to 85 and I have 10 more minutes to accomplish what I need to do before I encounter the same senario.<br />
<br />
5/13/14<br />
Itchy hands and palms, and fingers continue to be a nusance. I want to chop them off. shoulder bone pain, very tender. lung peak flow is low at 325, usually normal for me is 350. I am watching closely, using my nebulizer as needed 3 times a day. when I speak I seem to loose my voice while talking I become winded. Using vicodin 750mg for pain taking 1/2 in the am and 1/2 at dinner time. If I am driving I use two aleeve for the day.<br />
Left side of my body is swollen and my knee and leg in great pain at the end of the day. Ice the leg, elevate, use voltaren, and finally vicodin to deal with pain. by morning the swelling is down, still painfu knee cap continues to throb with jabbing pains. back to using cane. Finishing out the month of May with all the above issues.<br />
<br />
<em>goldengirl55-mylifeisasoapopera.</em><em><strong>blogspot.com<br /><cite></cite></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em><br />
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and many more. Based on my exeriences I give advice, and share my experiences</cite><br />
<br />goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0tag:blogger.com,1999:blog-518866505760508124.post-58847527808970878762014-08-01T07:43:00.000-07:002014-08-15T17:38:07.499-07:00Gammagard 10% 7/18/14My referral for side effects during infusions.<br />
New Solution. starting IVIG infusions 8/4/14 and continue till 8/8/14<br />
<br />
<br />
Gammagard Liquid [Immune Globulin Intravenous (Human)] 10% is a preparation of highly purified and concentrated immunoglobulin G (IgG) antibodies used to treat primary immune deficiency, and to reduce the risk of infection in individuals with poorly functioning immune systems such as those with chronic lymphocytic leukemia (CLL). It is also used to increase platelets (blood clotting cells) in people with idiopathic thrombocytopenic purpura (ITP) and to prevent aneurysm caused by a weakening of the main artery in the heart associated with Kawasaki syndrome. Gammagard is also used to treat chronic inflammatory demyelinating polyneuropathy (CIDP), a debilitating nerve disorder that causes muscle weakness and can affect daily activities. Common side effects include flushing, headache, dizziness, chills, muscle cramps, back/joint pain, fever, nausea, or vomiting. Pain, redness, and swelling at the injection site may also occur.<br />
<br />
This is a human blood product,<br />
<br />
Side Effects hemolytic anemia, asceptic meningitis, increase blood viscosity leading to blood clots, renal failure, hypersensitivity reaction anaphalatic shock.<br />
<br />
Report reactions and questions call 1-866-424-6724<br />
Coverage medicare, medicaid manage care plans cover treatments. Some my require prior authorization, ie.. letter of medical neacessity<br />
<br />
Gammagard 10% 1-800-423-2090<br />
<br />
Also used as maintenance therapy to improve muscle strength and disability in patients with multi functional neuropathy and myasthenia gravis. Should not be used by persons with hypersensitivty reaction, alaphalatic shock, to gammagoblins.<br />
<br />
Gammagard was approved in the US in 2005.<br />
Manufacturer is Baxter Pharmacuticals.<br />
first ivig solutions with no added carbohydrates or sodium.<br />
Since 1990 no transmission of infectious diseases with ivig has been reported.<br />
<div class="drugCenterContent new">
<!--Healthwise, Healthwise for every health decision, and the Healthwise logo are trademarks of Healthwise, Incorporated.-->Get emergency medical help if you have any of these <b>signs of an allergic reaction:</b> hives; difficulty breathing; swelling of your face, lips, tongue, or throat.</div>
<div class="drugCenterContent new">
Call your doctor at once if you have a serious side effect such as:</div>
<div class="drugCenterContent new">
<ul>
<li>urinating less than usual or not at all;</li>
<li>drowsiness, confusion, mood changes, increased thirst, loss of appetite, nausea and vomiting;</li>
<li>swelling, weight gain, feeling short of breath;</li>
<li>wheezing, chest tightness;</li>
<li>feeling like you might pass out;</li>
<li>fever with headache, neck stiffness, chills, increased sensitivity to light, purple spots on the skin, and/or seizure (convulsions); or</li>
<li>pale or yellowed skin, dark colored urine, fever, confusion or weakness.</li>
</ul>
</div>
Less serious side effects may include:<br />
<ul>
<li>mild headache;</li>
<li>dizziness;</li>
<li>tired feeling;</li>
<li>back pain, muscle cramps;</li>
<li>minor chest pain; or</li>
<li>flushing (warmth, redness, or tingly feeling).</li>
</ul>
You may want to register with this organization for a heads up on problems and recal of IVIG solutions.<br />
<h3>
<span style="font-family: Arial,Helvetica,Geneva,Swiss,SunSans-Regular; font-size: x-small;">The Patient Notification System is a free, confidential, 24 hour communication system providing information on plasma-derived and recombinant analog therapy withdrawals and recalls.</span><br /><span style="font-family: Arial,Helvetica,Geneva,Swiss,SunSans-Regular; font-size: x-small;">The system was created to provide consumers with a single, convenient, and confidential source for up-to-date withdrawal and recall information. Led by the <a href="http://www.pptaglobal.org/">Plasma Protein Therapeutics Association (PPTA)</a>, the Patient Notification System was developed by the manufacturers of plasma therapies with direct input from consumers.</span><br /> </h3>
<br />
Gammagard 10% has no sodium and no carbohydrates. <br />
<br />
Patient support program 1-855-250-5111<br />
Coverage and cost questions thru Baxter at 1-888-229-8379<br />
Report Side Effects to FDA 1800-FDA-1088<br />
<ul>
</ul>
<br />
<em>goldengirl55-mylifeisasoapopera.</em><em><strong>blogspot.com<br /><cite></cite></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em><br />
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and many more. Based on my exeriences I offer advice, and share my experiences</cite>goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0tag:blogger.com,1999:blog-518866505760508124.post-62271532735797236152014-07-21T06:30:00.005-07:002014-08-01T08:13:11.256-07:00Falling slowly into the abiss. 7/21/14.<br />
<em>goldengirl55-mylifeisasoapopera.</em><em><strong>blogspot.com<br /><cite></cite></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em><br />
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and many more. Based on my exeriences I give advice, and share my experiences</cite>goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0tag:blogger.com,1999:blog-518866505760508124.post-5785690393768239922014-07-04T11:44:00.003-07:002014-07-04T11:44:41.615-07:00Neurologist Re-Evalluate 6/25/14<br />
<br />
Neurologist Re-Evaluate 6/25/14<br />
<br />
Results:<br />
<br />
Continue with IVIG infusions since they are doing you so much good. Would not give up so easily. May have just been a bad lot. I would try again. Try a new brand.<br />
Recommending Gamnagard. Same doseage, same slow rate, same duration 8 hours for 5 days once a month.<br />
<br />
Gammagard:<br />
IVIG blood product.<br />
<br />
side effects:<br />
<br />
headaches, migraines, blood clots, heart murmurs, nausea, vomiting, sweats, chills, aseptic menegitis symptoms, rash, hives, anaphalatic symptoms, increased heart beat, joint pain, neck and lower back pain, seisures.<br />
<br />
These are basically the side effects you are going to get with any IVIG infusion. The trick is to hydrate hydrate hydrate. Before, during and after infusions. You need to hydrate with an electrolyte drink. High in electrolytes, but low in sugar. I am also to take 40 mg. of predisone two days before the infusions, and 20 mg. of predisone the day of the infusion. The threat of having these infusions does not out weigh the results.<br />
<br />
These past 8 weeks I have been experiencing my body slowing dissinagrating. My body issues have regrested to the point I was before I had started the ivig infusions back in 2012. All over body pain, weakness. shooting nerve pain in my legs, arms, fingers, hands, wrists. The pain of carpel tunnel in my hands, foreams. Not able to walk or climb stairs due to the weakness of my legs and ankles. Blurry vision, double vision issues, rashes. Poor stomach, digestion, malabsorption problems. Heavy platelet counts and low red blood cells and hemoglobin results. Chronic anemia, cognitive dyfunction and short term memory loss. Constant infections due to compromised immune system. Difficulty breathing, right shoulder bursitis. Pains I never knew I had, because they were under control by ivig infusions and medications have come to light. Just goes to show you what your medications are hiding.<br />
<br />
Gammagard is the only one of the IVIG blood products I can use. I can use any that start with Gamma. However, I can only find 5 all together and only the Gammagard fits that criteria. I guss we will give it a try. We have no other choice. Plasmapharesis is not available to me as an option fue to my autonomic dysfunction.<br />
<br />
I restart my IVIG infusions with Gammagard the week of 7/14/14. Wish me luck that I stay out of the ER Department.<br />
<br />
g<em>oldengirl55-mylifeisasoapopera.</em><em><strong>blogspot.com<br /><cite></cite></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em><br />
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and many more. Based on my exeriences I give advice, and share my experiences</cite>goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0tag:blogger.com,1999:blog-518866505760508124.post-56015378746165308482014-06-19T17:09:00.002-07:002014-06-20T12:43:47.589-07:006/19/14 Blood work<br />
6 week blood work done 6.19.14<br />
<br />
No Infusions for 8 weeks<br />
titrated down off predisone<br />
Still anemic even though my iron is normal<br />
<br />
RBC<br />
low<br />
Anemia is term referring to a reduced number of circulating red blood cells (RBC's), hemoglobin (Hb), or both. It is not a specific disease but an indication some other condition or disease is present. Hemoglobin delivers oxygen to the cells and tissues of the body, and someone who is anemic will have the following symptoms because of lack of oxygen.<br />
<!-- NEED 4 --><br />
Red blood cells are produced in the bone marrow and are released into the blood where they circulate for approximately two months. As they age or become damaged, they are removed from the bloodstream, and new red blood cells are made.. The number of red blood cells may become reduced because of decreased production or increased loss of red blood cells.<br />
<br />
HGB<br />
low<br />
A low hemoglobin count can be associated with many diseases. that cause your body to produce too few red blood cells. This can happen if your body makes less than normal amount of red blood cells. If your body destroys red blood cells faster than they can be produced, or if you experience blood loss. <br />
Diseases and conditions that cause your body to produce fewer red blood cells.<br />
<br />
Aplastic Anemia, Cancer, Certain medications such as chemotherapy drugs.<br />
Cirrhosis of the liver, Hodgkins lymphoma, non hodgkins lymphoma hypothyroidism, kidney disease, multiple myeloma, vitamin def.<br />
<br />
Diseases that cause your body to destroy red blood cells faster than they can be made: Enlarged spleen, thalassemia (inherited blood disorder), vasculitis.<br />
<br />
A low hemoglobin count can be due to blood loss from a wound, nose bleeds, digestive or urinary tract bleeding, heavy periods.<br />
<br />
My blood work this time around is a mess of H and L. Deciphering what they could me for me and my health issues. I have stopped the IVIG infusions until further evaluation can be completed. I have also titrated myself off the predisone. You would think this is a improvement. Instead I fear all my autoimmune diseases are coming into light thru my blood work. <br />
<br />
<div class="contentbox bgCallout">
HCT</div>
low<br />
A person who has a low hematocrit is referred to as being anemic. Some of the reasons for this could be loss of blood thru an injury, bleeding with surgery, and colon cancer. A low iron and low B-12 can also be the reason.<br />
<br />
MCV<br />
normal<br />
This is your mean cell volume. This a measure of the volume of red blood cells you have in each cell. Red blood cells carry oxygen to the body.<br />
<br />
MCH<br />
low<br />
<span style="color: black; font-family: Arial; font-size: 13px;">Generally, if the MCH level is below 26, this is considered too low. The MCH level can be too low because of blood loss over time, too little iron in the body, or microcytic anemia. Microcytic anemia is a condition in which abnormally small red blood cells are present. Smaller red blood cells means that less hemoglobin fits in each cell. Microcytic anemia is often caused by too little iron.</span><br />
<span style="color: black; font-family: Arial; font-size: 13px;"></span><br />
<span style="color: black; font-family: Arial; font-size: 13px;"> MCHC</span><br />
low<br />
<span style="font-size: small;">This could be due to hypochromic anemia. </span><span style="font-size: small;"> Hypochromic anemia means the red blood cells do not have enough hemoglobin to function correctly.</span><br />
<span style="font-size: small;">You need to investigate this further if this is the case. You can have a problem absorbing iron. This is something that can involve your intestines with bleeding, tumors and other autoimmune diseases of the gastro area of your body.</span><br />
<span style="font-size: small;"></span><br />
RDW<br />
high<br />
<span style="color: black; font-family: Arial; font-size: 13px;">Red cell distribution width is a measurement of the size of each red blood cell.</span><br />
<span style="color: black; font-family: Arial; font-size: 13px;">A reason for the RDW level to be high and the MCV level to be normal can be a decrease in vitamin B12 or folic acid.. It can also be an indication of an iron problem. Being exhausted, having shortness of breath, headaches, and a loss of appetite can be some or all of the symptoms.</span><br />
<span style="color: black; font-family: Arial; font-size: 13px;"></span><br />
<span style="color: black; font-family: Arial; font-size: 13px;"> </span><br />
<span style="color: black; font-family: Arial; font-size: 13px;"></span>PLT (Platelet Counts)<br />
high<br />
<br />
<br />
Having a faulty bone marrow is the problem here. Red blood cell platelets are made in the bone marrow. When this happens it is called essential thrombocythemia. There are two kinds of thrombocythemia.<br />
<br />
The first is the primary thrombocythemia. The platelets are not normal and they can for blood clots causeing bleeding.<br />
<br />
The secondary thrombocytosis happens in additon to another disease. This also can cause the platelet count to be high. Conditions and diseases such as cancer.<br />
<br />
MPV<br />
low<br />
Low levels usualling indicate thrombocytopenia. <br />
This can be caused by aplastic anemia.<br />
<br />
Lymph%<br />
low<br />
Lymphocytes are a type of white blood cell that is made in the bone marrow and is located in the immune system. Lymphocytes protect the body from viral or bacterial <br />
infections. Using methotrexate for RA control can suppress your immune system and cuse low lymph%.<br />
<br />
Aplastic Anemia/Bone Marrow Dysfunction<br />
Aplastic anemia occurs when the body can not produce the proper amount of white blood cells. This leaves a person exhausted and open to infections and bleeding disorders. This condition can develop at any age. It can occur out of the blue and worsens over time. People going thru radiation and chemotherapy cancer treatments and those exposed to toxic chemicals are at a greater risk.<br />
Treatment includes blood transfusion, observation and medications. In severe cases, transplant of the bone marrow is needed. Resting and avoiding falls or cuts and having protection against infections are advised.<br />
<br />
Autoimmune disorders such as multiple sclerosis, lupus, and RA can cause low lymphocytes. These diseases are inflammatory conditions of the body and nerves.<br />
<br />
Cancer of the blood can lead to low lymphocyte counts. Leukemia and lymphoma can lalso cause this.<br />
. <br />
MONO#<br />
high<br />
<br />
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<input name="action[PageArticleCom:printArticle]" type="hidden" value="true" />Monocytes are blood cells that help the immune system function properly. </div>
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Stress, fevers, inflammation and damaged organs can be one reason for high monocytes. If you have had mononuculosis you will have a high count of monocytes.<br />
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g<em>oldengirl55-mylifeisasoapopera.</em><em><strong>blogspot.com<br /><cite></cite></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em></div>
</div>
</div>
</div>
</div>
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and many more. Based on my exeriences I give advice, and share my experiences</cite>goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0tag:blogger.com,1999:blog-518866505760508124.post-79223282601597853882014-06-13T17:27:00.003-07:002014-06-20T12:46:45.162-07:00Sjorgren's The Forgotten Disease 6/13/146/13/14<br />
<br />
Sjogren's<br />
The forgotten Disease<br />
<br />
The left side of my entire body from my face and neck, left arm, hands, fingers and top of my left thigh to my toes on my left foot have been ever so slightly swollen since 2010. I brought this to the attention of my doctors. They sent me to a vascular doctor who could find nothing wrong. Each doctor not feeling a concern for this health issue. I dismissed it. In my research for Sjogrens I think I may have found my own answers.<br />
<br />
The awareness level for this disease is almost non-existing. A number of doctors have never even heard of Sjorgens. It is an autoimmune disease where by your immune system is attacking the healthy lymphatic system and slowly destroying the glands you need. With the glands destroyed they can no longer produce the salavia you need for your teeth and mouth. They can not produce the tears you need from your tear ducts to lubricate your eyes. This can lead to ulcerations of the eye surface, obstruction of your eyesight, and perhaps loss of eye sight all together.<br />
<br />
This disease is part of the umbrella term for mixed connective tissue disease. This covers lupus, RA, scerlederma, and sjogrens. and polymyositis.<br />
<br />
Sjogrens symptoms present as shortage of salavia production, dry mouth leading to dental cavaties and loss of teeth, swollen glands in the neck, jaw, and in front of the ears and behind your cheek bone. Sjogrens (Show' Grens) can go undiagnoised for years. A Rhumotologist can diagnois Sjogrens thru blood work and checking for the antibodies that point to Sjogrens.<br />
<br />
Sjogrens is a systemic disease. Meaning it can also compromise the kidneys, lungs, eyes and lymphatic system. Having Sjorgens causes one to develop allergies to all kinds of medicines. It also causes swelling and edema when the lymphatic system is not working correctly.<br />
<br />
Most doctors look to my weight as the main reason I have multiple health problems. Most patients taking predisone do have a weight problem. Predisone is the medication you love to hate. It makes you feel so energetic and does decrease your pain but at a price of rearranging your body both inside and out. I make no excuses I eat like a horse, I am not watching my calories. but I do try to watch my fats choosing healthy fruits and veggies. Of course that is another issue when you are on coumadin blood thinners it is difficult to eat as healthy as you would like to eat. When I am hungry it is a non-stop gnawing that takes over my mind. It can not be ignored. Even 20 minutes you still want food. Quite frankly with my gastroparesis symptoms of vomiting and nausea after eating something. The fact that I can eat the food and keep it down is a rarity. I decided I will eat what I am craving.<br />
<br />
It has been 13 years that I have been on this health journey. I am feeling my shortness of breath that I am experiencing so frequently could be related to my Sjorgen's I was diagnosied with years ago. In reflection I started having low CBC bloodwork returns as early as 2007. I plan on outlining my problems, symptoms and emailing my rhumotologist with my thoughts and see if I need to come in for an appointment.<br />
<br />
In 2006 I visited my ENT Doctor for evaluation of Sjorgen's. A lip biopsy was performed in his office using local anesthesia. The doctor cut the inside of my bottom lower lip. With his scalpel slowly cutting a small triangle design into the fleshy part of my lower lip. The tissue was extracted, marked and sent to a pathologist for evaluation. A stitch or two to close things up and I was done. It was not painful and my lower lip did heal. However, I always feel a tingling and numbness in that area of my lower lip now. The results were back in a week to 10 days and we had our answer.<br />
<br />
Sjorgrens and possibility of Lymphoma is high.<br />
<br />
to be continued................<br />
<br />
<em>goldengirl55-mylifeisasoapopera.</em><em><strong>blogspot.com<br /><cite></cite></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em><br />
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and many more. Based on my exeriences I give advice, and share my experiences</cite>goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0tag:blogger.com,1999:blog-518866505760508124.post-81797191668963591272014-06-12T07:39:00.000-07:002014-07-21T06:36:21.727-07:00Fibromyalgia Information 6/12/14<div id="HeaderLearnTheFactsBg">
<h1 class="Pageheader3">
Myths and Facts About Fibromyalgia</h1>
<br />
www. FIBROCENTER.com. </div>
<div>
Fabulous site for Information----- check it out</div>
<br />
<div class="contentText">
<span class="contentHeader">Myth: Fibromyalgia is rare.</span><br />
<span class="contentWord">Fact:</span> Fibromyalgia is one of the most common
types of chronic pain disorders. It is estimated that more than 5 million people
in the United States have fibromyalgia.<br />
<br />
<span class="contentHeader">Myth: Fibromyalgia is “all in the head.”</span><br />
<span class="contentWord">Fact:</span> Fibromyalgia has been described for
centuries (See <a href="http://www.fibrocenter.com/fibromyalgia-disease.aspx">History of Fibromyalgia</a>).
But it wasn’t until 1981 that the first scientific study formally confirmed
fibromyalgia symptoms and tender points in the body.<br />
Since then, researchers have further tested pain reactions in people with
fibromyalgia.<br />
<ul>
<li>Imaging studies show that the brains of people with fibromyalgia have more
activity in reaction to pain
<li>Studies also have shown that people with fibromyalgia feel pain more
intensely at lower levels than people without the condition </li>
</li>
</ul>
It's thought that overactive nerves cause the pain of fibromyalgia (see <a href="http://www.fibrocenter.com/fibromyalgia-research.aspx">Science of Fibromyalgia</a>). Although
fibromyalgia is not just “in the head,” it is still important to understand that
the condition is stressful—especially when it goes undiagnosed. Stress can also
make fibromyalgia worse.<br />
<br />
<span class="contentHeader">Myth: Doctors diagnose fibromyalgia when they can’t
find a “real” diagnosis.</span><br />
<span class="contentWord">Fact:</span> It’s true that diagnosis of fibromyalgia
often takes time. There is no specific lab test for it. Your doctor can't see it
on an x-ray or do a blood test to confirm it. Instead, he or she relies on your
symptoms and a physical exam. What’s more, the symptoms can overlap with
symptoms of <a href="http://www.fibrocenter.com/what-is-fibromyalgia.aspx">several other conditions</a>.
These other conditions must be tested for as well.<br />
But fibromyalgia is very much a real condition. In 1990, the American College
of Rheumatology developed <a href="http://www.fibrocenter.com/diagnosing-fibromyalgia.aspx#ArcPain">guidelines</a> for diagnosing
fibromyalgia. Today, these guidelines are widely applied.<br />
What’s more, there are now thousands of studies validating this form of
chronic widespread pain. In 1990, there were only about 200 published studies on
fibromyalgia. Today there are more than 4,000 published fibromyalgia
studies.<br />
<br />
<span class="contentHeader">Myth: Fibromyalgia is a “woman’s
disease.”</span><br />
<span class="contentWord">Fact:</span> The majority of people with fibromyalgia
are women (about 80%). But, remember that fibromyalgia is a common condition.
That means many men are diagnosed as well.<br />
Studies have found that women with fibromyalgia do tend to have a lower pain
tolerance and more symptoms than men. Both genders, however, responded similarly
to fibromyalgia treatment as well as other nondrug treatments such as
exercise.<br />
Fibromyalgia is also seen in all age groups, from teenagers to older people.
But the symptoms more typically begin in a person’s 30s. Fibromyalgia occurs
around the globe. And it appears in all ethnic groups and cultures.<br />
<br />
<span class="contentHeader">Myth: The pain of fibromyalgia is mild.</span><br />
<span class="contentWord">Fact:</span> Some people only experience mild
symptoms, especially when they are being properly treated. For others, the pain
can be severe. It can have a significant impact on quality of life. Simple
things they once took for granted, like working, going for a walk, household
chores, and taking care of their families can become difficult. Symptoms also
often get worse under stress or even under certain weather conditions.<br />
<br />
</div>
<em>goldengirl55-mylifeisasoapopera.</em><em><strong>blogspot.com<br /><cite></cite></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em><br />
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and many more. Based on my exeriences I give advice, and share my experiences</cite><br />
<br />goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0tag:blogger.com,1999:blog-518866505760508124.post-44013380738400599672014-06-10T13:59:00.000-07:002014-08-05T11:12:07.991-07:00More than POTS 6/5/14<em><strong></strong></em><br />
<strong><em>My blood pressure is exceedingly higher. 189 over 110 with a pulse of 105. This worries me greatly. Even after taking the 15mg of morphine and using the breathing treatment. My nebulizer medication is Iprotrapium bromide 0.2%/25mg/ml. I started using the nebulizer before bed and found I slept a little better. So I decided to use the nebulizer treatments four times a day. After breakfast, lunch time, before dinner, and at bedtime. My bedtime is 11 p.m. so they are spread out to roughly every 4 hours. </em></strong><br />
<strong><em></em></strong><br />
<strong><em>My shortness of breath seems to have subsided even though I still get the full break out sweating and tightness of chest, and sometimes chest pain and palpatations. This got me thinking that maybe this POTS extreme blood pressure and pulse can be controlled with the nedulizer treatments. Leading me to realize a big part of all this is centered on my lungs and lung fuction. If I am in an environment with no air conditioning, I immediately know I can not be there. I am unable to breath without feeling like there is an elephant on my chest. I immediately take my blood pressure and pulse. Both are very high. Leading me to believe my heart is working overtime to compensate for the low lung function.</em></strong><br />
<strong><em></em></strong><br />
<strong><em>I continue to take my nebulizer treatments 4 times aday. I realize that I need to cut back to 3 times a day. Breakfast, lunch, and diner. Leaving out the one for bedtime. I am just too anxiety ridden and anxious to fall asleep if I use the nebulizer before bed. This is a side effect of the Ipratropium Bromide. My inhaler, Atrovent contains the same medication as I am using for the nebulizer. I don't really feel the need to use the inhaler, only for rescue, as much as I did in the past. </em></strong><br />
<strong><em></em></strong><br />
<strong><em>The CT of my lungs did not show any pulmonary embolism. This is the diagnostic condition they were looking for. I wonder if they missed something. Would they find something else, it the diagnostic labeling was changed. I remember back in 2007 I was having stomach pains in my abdomen. I was sent for a CT of the abdomen with a diagnostic conditon of a bowel obstruction. The report came back normal with no sign of a bowel obstruction but when I picked up a copy of the medical records days later it showed I had a bloodclot. They were not looking for a blood clot so it was not reported. Do you see why it is so important for you as a patient to always always get copies of your bloodwork and and tests that are done.</em></strong><br />
<strong><em></em></strong><br />
<strong><em>I plan on following up with my pulmonologist. Both in how I feel the results of the CT are a question for me. Also I plan on letting him know that the nebulizer treatments are making a huge difference for me in this hot and humid weather. There is also a new medication I want to ask about called BREO and if it would be good for treating my chemically induced asthma/COPD. The side effects may be too great a risk for me.</em></strong><br />
<strong><em></em></strong><br />
<strong><em>My inhalation caused me to have scar tissue. The chemical compound called a G-PAC was a combination of hydrychloric, sulfuric acid, ferric chloride, polystrene. All these chemicals individually are hasardous. Together they are toxic and carcenigenic. Hydrochloride and sulfuric acid mixing with moisture, whether it be in the air or in my mucus membranes will burn what ever it comes in contact with leaving behind charded tissue. The FDA does not see a need for chemically induced asthma suffers. No medications are developed for us. I was told there is not a big enough demand to warrant putting the money into research. These people, myself included are given regular asthma medications in the hopes that something will be beneficial to us. It is hit or miss. To this date there is no research going on to treat chemically induced asthma suffers. I was hoping over time this would change.</em></strong><br />
<em><strong></strong></em><br />
<em>goldengirl55-mylifeisasoapopera.<strong><em>blogspot.com</em></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em><br />
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and many more. Based on my exeriences I give advice, and share my experiences</cite>goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0tag:blogger.com,1999:blog-518866505760508124.post-48622888198371363922014-06-09T16:07:00.001-07:002014-06-09T16:07:11.627-07:00Double Vision and Prisms 6/9/14 <br />
Lately, I have noticed a problem with my vision. During the day I will look at something and it is blurry. No big deal I have been living with this for a while. But in reflecting back to 2007 when I went to the ER it was because of double vision. I seem to notice as well at night as I look at this computer to type something or the TV to watch a program. My tv has the english version of the program for the deaf and disabled. Half the time my hearing is not very good and so I find the disability translation of the program I am watching very helpful. However, this past week I have been noticing my vision going from blurry to double. I place a hand over one eye and then I only see one item not two. I was told to do this by my opthomologist. She says if the double vision is corrected then that is a true sign of double vision. Otherwise it is just blurry vision.<br />
<br />
I have returned to the opthomologist for testing and she concluded I do infact have intermitten double vision. It mostly comes over me in the evening when I am tired. She had suggested putting prisms in my lenses. This means getting completely new lenses with the prism tweeking to earase my double vision issue. However, my prism measurement is at the bottom of the scale. The cost of the lenses is $500.00 and not covered by insurance. I just had my glasses changed a year ago. I reflect I have been living with this problem for awhile now. Should my prism scale increase I will definetely consider changing my lenses. But for now we can leave things as they are.<br />
<br />
<br />
In my research, I learned that the double vision is caused by an imbalance between my two eyes, The prisms would correct this imbalance. When I am tired the muscles between my eyes become very fatigued. The muscles break down and cause the double vision. It is best to work with the least amount of increase prisms. To exceed the lowest measurement will cause an over dependancey.<br />
<br />
I inquired what could be causing my double vision and she stated it is usually a sign of ms. Did I ever have an MRI? In the course of diagnosing my chronic inflammatory demythenating polyneuropathy I have had yearly MRIs since 2010. Each one showed a small vessel disease with small hypersensitivity spots. Referencing my 10/22/12 entry: MRI Going into my head. If this is indeed ms, I feel the doctor would send me for another MRI to see if any changes could be causing my double vision. This is not something I want to do right now. I am putting it on my list of things to do in the future.<br />
<br />
<em>goldengirl55-mylifeisasoapopera.</em><em><strong>blogspot.com<br /><cite></cite></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em><br />
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and many more. Based on my exeriences I give advice, and share my experiences</cite><br />
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<div class="the-answer">
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goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0tag:blogger.com,1999:blog-518866505760508124.post-22641891122392126532014-06-05T16:25:00.000-07:002014-06-05T17:42:14.526-07:00Sjogren's II and my bloody nose 6/5/14Mayo Clinic Research<br />
<br />
Sjogren's syndrome often accompanies other immune-system disorders, such as rheumatoid arthritis and lupus. In Sjogren's syndrome, the mucous membranes and moisture-secreting glands of your eyes and mouth are usually affected first — resulting in decreased production of tears and saliva. <br />
<br />
If they put no other quote on my tombstone let it show this one:<br />
I say it repeatedly and truly believe it.<br />
<br />
KNOWLEDGE IS POWER<br />
<br />
The information from the Mayo Clinic website is telling me what I need to know. Sjogren's effects the mucus membranes.<br />
<br />
For the past 6 weeks I have been bothered by nose bleeds. Small and irrating, not big gushing of blood. I am on coumadin for life due to 3 blood clots of the past. I mention this to my PCP and he does not seem to be troubled by my nose bleeds. My coumadin is not decreased. I reflect on this decision. Does he feel the risk of blood clots out weighs the complications of a bloody nose. I remain on 4mg of coumadin daily. I have also been watching my POTS. Walking tachycardia is increasing. I can only surmise it is do to the increase stress of my lungs and being able to breathe. I give myself a breathing treatment and the blood pressure and pulse rate decrease. This is great as my blood pressure was measuring 180 over 105 with a pulse of 104. This is worry time for me. I am thinking I need to go to the ER. My blood pressure and pulse has been like this all day long. I am worried I could be headed for a stroke. I discuss my situation with my husband. My hubby tells me to have a breathing treatment and to take some left over from the last ER visit morphine. That is all they are going to do if I go to the ER. That has been the scenario of the past ER visits. I agree and between the breathing treatments and the 7.5mg. of morphine (I only took half a pill) my blood pressure reading is 155 over 90. Still not optimium, but it is coming down. I will have another breathing treatment in 4 hours and take the other 7.5mg. of the morphine. The hours creep by and I continue to monitor my blood pressure. It is slowly dccreasing and my heart and lungs are not working so hard to function. I feel I put off another trip to the ER and feel confident enough to fall asleep. <br />
<br />
I awake at 6:00 am and need to blow my nose only to find it is bleeding again. I reflect that my nose bleed is probably from the blood pressure being so high the night before. I am still worried. I have never had a nose bleed problem before and now I can't seem to get the blood to stop. It's been two hours. I reflect I am bleeding longer because I am on coumadin. If I put my head back, I feel a post nasal drip and I am sure it is not mucus. If I sit errect, the blood is gushing out of my right nostril faster than I can wipe it away. I am going thru tissues like crazy. I called my PCP and he suggests keeping the coumadin at 4mg and not to worry. I felt maybe I should have a CT of my nasal passaages as something was definetely wrong. But he knows me as a patient and all my medical history. I did take pictures of my bloody tissues for my next appointment so I could share them with my PCP and he could see the extend of the blood and blood clots that were spueing from my nose. If it did not stop I was to go to the ER. Now I feel I can chalk the whole thing up to my sjogen's condition. Using a humidifier in my bedroom when I sleep, and attaching a water tray to my cflex machine at night has helped me tremendously. No more nose bleeds, but should I have to go to the ER at least now I can tell them I have sjogrens as part of all my other autoimmune diseases. Maybe I should have the nostril corderized... um.....no way it sounds too painful.<br />
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The hallmark symptom of Sjögren's syndrome is a generalized <a href="http://en.wikipedia.org/wiki/Dryness_(medical)" title="Dryness (medical)">dryness</a>, typically including <a href="http://en.wikipedia.org/wiki/Xerostomia" title="Xerostomia">xerostomia</a> (dry mouth) and <a href="http://en.wikipedia.org/wiki/Keratoconjunctivitis_sicca" title="Keratoconjunctivitis sicca">keratoconjunctivitis sicca</a> (dry eyes), part of what are known as sicca symptoms. Sicca syndrome also incorporates vaginal dryness, chronic bronchitis and lacks signs of arthritis. Sjögren's syndrome may cause <a href="http://en.wikipedia.org/wiki/Human_skin" title="Human skin">skin</a>, <a href="http://en.wikipedia.org/wiki/Human_nose" title="Human nose">nose</a>, and <a class="mw-redirect" href="http://en.wikipedia.org/wiki/Vaginal_dryness" title="Vaginal dryness">vaginal dryness</a>, and may affect other organs of the body, including the <a href="http://en.wikipedia.org/wiki/Kidney" title="Kidney">kidneys</a>, <a href="http://en.wikipedia.org/wiki/Blood_vessel" title="Blood vessel">blood vessels</a>, <a href="http://en.wikipedia.org/wiki/Human_lung" title="Human lung">lungs</a>, <a href="http://en.wikipedia.org/wiki/Liver" title="Liver">liver</a>, <a href="http://en.wikipedia.org/wiki/Pancreas" title="Pancreas">pancreas</a>, <a href="http://en.wikipedia.org/wiki/Peripheral_nervous_system" title="Peripheral nervous system">peripheral nervous system</a> (distal axonal sensorimotor neuropathy) and <a href="http://en.wikipedia.org/wiki/Human_brain" title="Human brain">brain</a>. Skin dryness in some Sjögren's patients may be the result from lymphocytic infiltration into skin glands. The symptoms develop insidiously, and the diagnosis is not considered for several years because the complaints of sicca are attributed to medications, a dry environment, aging, or believed to be too insignificant to pursue.<sup class="reference" id="cite_ref-4"><a href="http://en.wikipedia.org/wiki/Sj%C3%B6gren's_syndrome#cite_note-4">[4]</a></sup><br />
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<em>goldengirl55-mylifeisasoapopera.</em><em><strong>blogspot.com<br /><cite></cite></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em><br />
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and many more. Based on my exeriences I give advice, and share my experiences</cite><br />
<br />goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0tag:blogger.com,1999:blog-518866505760508124.post-36524196309469273782014-06-05T06:42:00.004-07:002014-06-05T16:37:17.148-07:00 Living with Sjorgens-6/2/14<br />
Sjorgen's is such a disabling disease. Another one on my list of autoimmune diseases. I am not sure which is worse, the dry burning eye disease or the incrediable sense of fatigue. Not the usual, I am tired fatigue, but the I can't lift my head off the pillow fatigue. I never know how to plan my day as one moment I am putzing around the house accomplishing whatever little I can. The next I am so tired it is like someone pulled my plug and I need to sit down...NOW. There is no waiting, I need to sit down or fall down, I decide to sit, rest and wait for a moment when perhaps I can continue what I was doing. That moment never comes. It is at this moment I am forever thankfull for my family and the support they give to me. I can not pick up my son from work as scheduled. My husband will pick him up on his way home from work. Dinner becomes something easy like frozen pot pies or left overs from last nights dinner. I text my husband I am going to try to nap and I am off to bed to try to sleep. My eyes are so heavy I can bearly keep them open to see as I slowly make my way up the 13 steps to my bedroom. My thighs and ankles feel weak and I ascend the steps one at a time like a toddler. Laying in my bed and looking around my bedroom I long for my energy of the past. When I could start a project and whip thru it at ninety miles an hour and go onto the next. Feel a sense of accomplishment. Instead, I look around and try not to let all the mess mentally eat away at me. <br />
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If I push myself too far on any given day, I pay for this fatigue dearly. The exhaustion is so much that I need to spend the entire next day in bed. If I am to attend a once in a life time event, well then I do and pay for it later in exhaustion sometimes lasting days before I feel like I can function again. But we all make our choices. What are we suppose to do lie down and not live our lives. It is not so much disappointing people when you can not attend a family event it is the loss you feel for yourself as well. Those memories took place without you, they are memories other people will have and cherish and you do not have them and never will.<br />
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I never know when this feeling of exhaustion is going to happen. There is no warning signs. But when it does happen it chops me to my core. I can not longer function, and the best thing I can do at that moment is stop everything and go to my bed and lie down. Like wise I feel like this when the weather is changing. I can tell in the early morning before I listen to the weather report that it will be a humid day. This totally drains me of any activity and my air conditioned bedroom becomes my cave for the day. When the humidity hits, it is the worse. Not only is my pain level thru the roof, but my breathing is very imparted. I need to break out my nebulizer equipment. Every 4 hours I will give myself a nebulizer breathing treatment. Having COPD and chemicallly induced asthma is the worse during the hot, humid Summer months. The cold winter months are not much better. The extreme cold causes me to remain inside due to the breathing difficulty of my lungs. You may say that I really only have a life during the seasons of Spring and Fall.<br />
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<em>goldengirl55-mylifeisasoapopera.</em><em><strong>blogspot.com<br /><cite></cite></strong><cite>This blog is solely for the purpose of documenting my health issues. This blog is based on my own research and experiences. This is not meant to be viewed as anything else, or take the place of your doctor.</cite></em><br />
<em><cite></cite></em><br />
<cite>.http://goldengirl55-mylifeisasoapopera@blogspot.com follow my many obstaciles and health issues on my blog. I discuss all my autoimmune diseases, 10 so far, and many more. Based on my exeriences I give advice, and share my experiences</cite><br />
<cite></cite><br />
<cite></cite><br />goldengirl55http://www.blogger.com/profile/17008435040446976604noreply@blogger.com0