Showing posts with label autoimmune illness. Show all posts
Showing posts with label autoimmune illness. Show all posts

Monday, January 28, 2019

PPMS (Primary Progressive Multiple Sclerosis) versus MS

Has anyone heard of "PPMS"? (Primary Progressive Multiple Sclerosis)... I was looking into some issues about a right foot, that tends to "hang" at times walking, no matter what shoes or where I am walking, and it's not like "foot drop"... plus I've noticed I "feel" more "clumsy... which I've always been a bit "off" but I am over the past month or so, feeling like I have this "very slight stagger" not like a "drunk can't walk" thing, but just like I will be walking jut fine and suddenly find myself off balance, or like I am stumbling, but not like someone else may notice it... it has not gotten to the point I would assume, anyone else would see it, but I know it's there... I've always kidded myself about "walk much"?

LOL, because I sometimes feel as if I walk off step to one side for a step or two... but this is more of that, and it's different from anything else I've experienced. I thought at first "it's all in my head" or I've just been so stressed between doctor's the danged shower drain mess, the cold weather tends to make me "stiff" which causes you to kind of feel off balance at times, and that I just have too many "irons in the fire"... and I really wanted to get back to oil painting (I found out that the guy Bob Ross that taught a couple of decades ago on television, all of his series and episodes are on U-Tube, from the very first one.. and I recall Dad used to watch him... he was fascinated how anyone could do that, yet I found out I was quite good at oil painting and want now with these online video's I could do them right here at home... but I also know I need to be working on getting that back room worked on and other things around here, so between putting myself in a place of "what I "NEED" to do versus what I would LIKE TO DO... I just felt I've been in too big of a hurry lately, causing me to be a bit clumsy at times... Anyway, I found several UR's and information on PPMS but I had not heard of it until I found it today... so I thought I would ask any of you if you knew about it....

Wednesday, August 26, 2015

Fed Up, Tired, of Struggling, Hardships, Chronic Illnesses, Tests, Autoimmune illnesses, broken relationships, and feeling "broken"... where and when does all the HORROR end?!

I am just so OVERWHELMED with so many ridiculous "hoops" I am having to "jump" through between doctors, other health facilities, tests, labs, insurance, pharmacies, good Lord, I cannot even think of a word to describe the freaking NIGHTMARE I've been having to put up with over these past weeks. May=ny of you already knew about the "lumP on my left upper front thigh, and the 3 WEEKS (well in all 21 DAYS) of not just ONE, but TWO extremely powerful antibiotics... Bactrim and then Rifampin which is used for a "cocktail" of meds for people with TB (Tuberculosis).... in fact my pharmacy did not even have it, and had to order it for me. I was on those two at the same time, 3 different times, 7 days each. The "lump" was about the size of a silver dollar, maybe a bit larger, and had already been on my thigh about 10 days before I began to feel like I needed to have it looked at. My PCP of course thought it was cellulitis. It never "erupted" on top of the skin, like some of these things do. It continued to remain "under the skin" but in a large lump, that at first was sort of soft. At first the antibiotics seemed to "shrink" it down. So, I was relieved. I am also facing LUMBAR/SACRAL one level back surgery, which NEEDS to be done BEFORE the end of the year. I am so FED UP WITH AARP UNITED HEALTH CARE - MEDICARE ADVANTAGE PLAN - SECURE HORIZONS!!! that I could ring all of their necks. They "arbitrarily" after me researching them for MONTHS, with online searches, phone calls not just to them, but also to MY own doctors, looking up my meds and so forth, ALL seemed to TAKE this insurance. Well, I still am not sure how they got by with it, but somehow AFTER January 1st when you cannot ANY longer change until the following year... they "got rid" of many of the providers... many of them DOCTORS that are right here in my county, which is why they should COVER THEM! They DO NOT EVEN cover ANY HOSPITAL other than me having to go 40 miles plus up to the Dallas area. I had Humana for several years, and had some problems with them, SO I decided that this stupid plan which is ENDORSED BY AARP - would be better - NOT!!!! They don't even know when you CALL them if "a doctor" is on the plan or not. In fact in my search for a General SURGEON to remove this lump ASAP, I called two of them, and even their own offices were NOT SURE whether they "were or were not" "in netowrk" providers!! HOw the HELL they can get by with this is beyond ME... but you can bet, Humana "was" and appears to still be FAR BETTER than UNITED HEALTH CARE, AND I INTEND ON TELLING AARP, and United Health OFF, as I get rid of them for 2016! I have had to PAY out of MY OWN POCKET to KEEP my Rheumatologist! I NEED a damned Chest Xray, due to the stupid blood work for the TB test not being done in time. thus the test came back "indecisive", thus before I CAN BE PUT ON XELJANZ I HAVE TO HAVE THE X-RAY AND NO ONE here locally can do it under the insurance! So, I again have to PAY OUT OF POCKET FOR A CHEST XRAY - Our Urgent Care Center does not even take the insurance... talk about BAD! So, I did find out they would do the Xray for me for 80.00! Which is still high, but it would be more at our hospital etc... so I go over there yesterday (I should have had this done weeks ago) but due to the cellulitis, the issues with my own back, doctor visits, and so forth, then my Mom's come to find out not a hip, but also a lumbar spine problem, then I got sick from the antibiotics and turned around and then got a stomach virus... and then my Mom's sister passed away after battling stomach cancer for several years... SO yesterday after my echocardiogram - I went across town to Urgent Care. THEy DID HAVE the "order" for that X-ray, because I had called them a few weeks back to make sure... but the woman there who was NOT HELPFUL what so ever 0 swore the "order" from my Rheumy was NOT there... SO I go and call them, give the the "fax number" she gave me, and it was WRONG! She told me the number for the phone and not the fax, then blamed me!! By now I was LIVID, tired, already upset enough, hurting, between everything else, and now I have been in fear to take my Orencia, even though I have a brand new batch of it, due to the cellulitis I feared taking it! So, even before that, my RA has grown much WORSE especially in both hands. My knuckles stay swollen and you can see the swelling even between my fingers on my hands... it first was my right hand, but now BOTH of them are terribly bad. My grip is getting so weak, I can't open things, and I am just having hell with both hands... SO they finally get the right FAX Number, and they fax the order over, BUT IT WAS SUPPOSED TO BE FOR ONE VIEW, and the order was for TWO! So, that meant I had to pay 160.00!!! rather than 80! Well, I knew since this was strictly to rule the blood work was "wrong"... so 1 view was enough, BUT they had to have the Order from the doctor stating 1 view BEFORE THEY COULD do the Xray! SO, I finally GAVE UP, came home, sent my RHEUMY AN EMAIL telling them my dilemma and they were supposed to resend the order for 1 view!!! BUT by then, I had gone to the store, the fire ants are now eating us alive after the bit of rain, so I needed poison for them, and needed to see my Mom... so I decided to wait and tomorrow I will go back for the Chest Xray! Of course that is ONLY a portion of this entire ORDEAL.. My Mom I take next Tuesday for the EPI's the steroid injections for her back, and that is in Dallas. FINALLY, after hours online and on the phone I FOUND A SURGEON IN THE TOWN OVER about 15 miles or less away that WILL TAKE MY INSURANCE AND IF I NEED THE PROCEDURE DONE AS AN OUTPATIENT, I found out at least our Outpatient Surgery Center here in Town DOES take my insurance and he does do procedures there... but HE CAN'T SEE ME UNTIL A WEEK FROM FRIDAY! Now this lump has turned into a much harder lump, plus it now is tender to touch. It has also grown "taller" and is much more noticeable when you look down at my leg. Not only that, but the "2nd" one, a much smaller one that came up about 3 weeks ago or so, but on my right upper thigh, almost straight across from the 1st one "seems" to be getting a bit larger. It still is only about the size of a dime, but I can tell, maybe it is just me, but it is almost feeling as if it is growing "outward" where it can be seen more. I had bumped the large one accidentally on a chair I think on Monday. It hurt like hell, and now I am not sure if it is because I hit it, OR what is happening, but now for the 1st time it is "red" at the surface of my skin, almost as if it may try to come outward, rather than stay underneath the skin as it has now for all this time. I've been keeping a close eye on it, and been making sure I watch for more signs of infection, like it feeling like it is "hot" to the touch, or that I am not having signs of running a fever... I guess that is why I am a bit upset that I have to wait until a week from Friday to see the surgeon... if this thing does become infected, and does try and "open up" on top of the skin, with my already compromised immune system issues, that would not be a good thing. That was the one good thing when I was on the antibiotics, it nor I showed any outward signs of having an infection, such as fever, chills, and so forth. But, earlier, I had been outside this morning, and even cut a few limbs off one of my trees, then did some arranging of things in my regular freezer, and moved some stuff to my deep freeze.. I had bought some "extra" stuff for the freezer and needed to clean out stuff that was too old, and then put some of this new food into the deep freeze... and I did. I even had some chicken pieces that I decided I really needed to cook, since they had been in the deep freezer for a while. So, I took all of them, put those in my slow cooker, and decided to make some chicken pulled bar-be-que. Then I can freeze that, and have it later... especially when the fall and winter come... and suddenly as I did that, I came down with a horrible headache, and I had one last night out of the blue, when I was going to sit down and watch a movie. I had to finally lie down, after taking some meds, and it went away in the night. But, suddenly it hit me again, and I began to feel nauseated which sometimes I do, especially if I have a bad headache... before I could even take some meds, and try to sit down for a bit on the sofa, I had to run to the bathroom and was sick to my stomach - and what made that really odd, for one, I had not really had much of anything to eat, even last night. I ate some fresh fruit I had cut up, and was not really hungry, so I later had a bit of sugar free Sherbert... so I just can't believe I got that sick, and I really did not have that much in my stomach... but I did, and of course it scares the HELL out of me to throw up.. I am always terrified to do so and will do just about anything to try and not... but even as I tried to sit on the sofa, it was too late, and I wound up being sick after all.... so I went took medications for my headache and some Promethizine to hopefully get my stomach settled down... and it did for now... I was writing this and had some of it done, then I got a bit upset over EVERYTHING going on, and I have not even said that there are several other things I need to either help my Mom with OR I need to get done, this week hopefully, so being BACK on the SOFA having a sick stomach and a headache is NOT what I needed this morning... The state has changed the laws about how we now "inspect and register" our vehicles... it used to be they were separate... now since May 2015, they have changed to you have to have your inspection, it has to be "current" and in the computer system, and then they will register your vehicle... well so happens mine is good till next May or so... but Mom's both inspection & registration are due... so I can't "register" her car, until I take it to be inspected... which is fine, but it is now a bit more red tape even though it is supposed to be "easier"... not really for us the driver's though, we still have to have both, but now we will have 1 sticker, rather than 2, one for each... anyway, I need to do that this week... plus I needed to go pick up a few things at Wally World, the Fire Ants have now just about taken over my yard back and front dammit... I had them completely gone... but after that rain we had last week, and I have not put the complete broadcast killer out since early Spring... as I do, but I did it so early, now it's not doing the job, so for now I am having to just put out the killer on the individuals beds. But, dammit, yesterday evening, (I ran out of the fire ant killer also) but bought some, and went around to my back yard, and there under one of my trees over my where the neighbors took down a building and they are building a new "monstrousity" for a stupid garage, which is bigger than my house... anyway, a HUGE bed was completely surrounding this tree... I bet it was 15 feet around, and no telling HOW DEEP... I know we had one by the same neighbors lawn (HE NEVER FREAKING does anything to get rid of them on his side) up at the front, and it was about 4 feet or more deep when I finally put out the poison for them, killed it off mostly, but then took a hoe and dug down and there is still almost an indention there where the bed of Fire Ants had been.... Plus he always mowed my lawn, when Jim would not... well hell since Jim left all of a sudden they barely even speak to me, and now he almost ignores me... and my front lawn needs mowing, but he also pulled the rope and broke it on my mower, so I have to fix it or get it fixed... and I paid him... anyway, I may have to pay someone else... because when the lawn gets a big tall, those damned fire ants build those nests within a night's time and "hide" in the taller grass. So, keeping it mowed down also helps to see the beds and also keep them from building them so much.... anyway, then I have to go BACK and hopefully get that damned chest x-ray done also tomorrow.... and Mom's Birthday is Friday... she will be 80 years old... and I so wanted to take her to the Casino at least for the day, and maybe spend one night... we have free rooms, and free buffet's... Anyway, I am just FED UP with everything seeming to go wrong, no matter how hard I try... nothing ever seems to come "easy" for me.... I have struggled in one way or the other throughout my entire life... either due to health, or "bad" relationships. or "crappy jealous bosses".... it just seems nothing is NOT complicated in my life... I keep trying to "have faith" and have hope... but here I am 55 years old and I feel like I have FAILED everything and everyone in my life... nothing I do ever seems good enough, and I am just freaking sick and tired of it all... every day there is a struggle, with health, doctors, meds, pharmacies, insurance, tests, no matter what, it just refuses to be "easy".... I feel cursed, or as if I've done something horrible and I feel punished and don't even know why..... Chronic Pain, Chronic Illnesses... they are horrible enough... but when you feel every damned thing in life seems to be like hellish and half an acre to get anything accomplished... and there are those the wonder why some people "give up"!!! Hell everyone has a breaking point, a point to where they cannot take anymore... and if you had to walk in my shoes for a week... you would know why, I am so fed up.....

After reading the "comment" made by a woman I knew nothing about, and thinking about it, I decided to "delete" her comment. Honestly, it had NOTHING to do with my post, she has NO profile or anything on "Google" to allow me to know a thing about her. I did answer her comment and I am going to leave up my answer under comments for now. I think if she would have left out about her "contact" information I may have allowed the post... but "spell casting" is really nothing to discuss on my blog... other than the past very early "history" I posted about my very limited knowledge on that type of subject, I felt it was not an appropriate response for my blog. I hope I don't offend anyone for removing it, I just felt it did not belong here....

Saturday, November 29, 2014

Primary or Secondary Sjogren's - Not getting enough attention, research, medications and answers!

I REALLY have been pushing about Sjogren's now for a long while. It seems I never REALLY had ANY of my doctors take it all that seriously, even as many times as I brought up the dry mouth, dry eyes, all of the mouth lesions I had and so forth. Then when only about a year ago, I began having my teeth literally rot off at the gum line and fall out, I began to see them a little more concerned. YET, I am STILL THE ONE who really pushed for the medication, which for Sjogren's there is only two. I tried both and am on Pilocarpine and have been for a long while. I spent several years chewing gum with no sugar and the Xilytol or however it is spelled in it, because it was supposed to HELP with moisture in the mouth, used eye drops and still felt like I cannot talk very long without being hoarse and sometimes losing my voice, or if I go anywhere, I have to talk something to drink... not even to the Wally World, and if I am going to shop, that means picking up a bottle of diet Sunkist, or green tea or something, so I can drink it as I shop. If I get in the car to go anywhere very far away from home, I go with a drink and gum. Well, of course ALL of what the few teeth I had left, by the time we finally found out how much damage was done, did make little difference. The "complete surround kind of special X-Ray" of my mouth, teeth, and jawbone, showed 99 percent of my teeth already going to rot out anyway. Thus as many of you know I went through the torture of having the rest pulled, fitted with dentures, of which AGAIN due to the Sjogren's, the bottom ones won't "hold" at all. You also need some "moisture" to help keep them in... the top ones do fairly well. I guess I have enough with the "suction" of them, along with the powdered Fixodent that goes on them, for the most part they stay in fairly well. So, I had to wait at the very least 90 days after they were all extracted before we could even think about the "mini implanted" little pins that my bottom ones will be fitted on, after they are implanted down into my jawbones in 4 places. Then my dentures will be "modified" to fit down on those pins which should hold them into place. I also found out, that the top ones they "usually" don't pin, which I thought they did. BUT, if mine won't stay in as well as they should then I look at putting 4 MORE on the top!!! Which will be ANOTHER OVER $600.00 FOR EACH PIN!!! Of course I still have the "oral/maxillary fissure" which sounds horrid, but a small hole as I have said before between my mouth and sinus passage caused by a root to pull a hole in it, when the tooth was extracted. So, that also is contributing to the top one coming a bit loose at times. Air can get in underneath it from that hole and then it makes the "grip" it has to the pallet of my mouth break loose. Anyway, back to my issues with Sjogren's. I REALLY feel as much as I PUSH for RA, Lupus, Raynaud's, Sjogren's, MS, FM... and other autoimmune illnesses and/or rheumatic and arthritic diseases, that Sjogren's needs to truly be addressed much further also. When it can truly cause as much damage to vital organs, eyes, mouth, teeth, stomach lining, the esophagus, swallowing, drying any "form" of mucous membrane, plus now I read that there is about a 50% CHANCE OF DEVELOPING NON-HODGINS LYMPHOMA, if you have Sjogren's! Women, of course tend to me at much higher risk due to the Sjogren's being Autoimmune in Nature. So, as I begin to think about my new book that I shall be writing on over the next year or so, and doing my part as far as helping to be a voice, to advocate, to be an activist, volunteer and Ambassador, for I feel ALL of those are very crucial also, I am going to be trying to learn a great deal more about Sjogren's, both primary and secondary. I also would love to hear from any of you that have it in either way. I am going to post this on my blog (by the way I am waiting to see some comments and posts from you guys and gals also)... and would love to have some of you jump on the band wagon about Sjogren's. It can be a highly dangerous, and sometimes deadly illness in itself. Plus you can also have Celiac Disease due to Sjogren's too.