RA my Enbrel came in, Lupus flare, Neck surgery coming up, 100% flattened disc, bone spurs, and joints giving hell, along with being tired and feeling lousy.

I FINALLY GOT THOSE two mini blinds up in my living room. This time I didn't step "hard" off the step stool. Thank goodness. But, the wood in this house is so HARD it is extremely difficult to put a screw or nail into the wood! It was definitely made from some extremely hard type of wood for sure. Anyway, my neck and entire body knew that storm was coming. I've hurt for several days and day before and yesterday was really bad. I had to make myself get up and do something. 

So, I baked a Lemon Pound Cake, got those blinds hung up finally, walked Peanut for a bit several times, and forgot I was completely out of any fresh fruit, and didn't even have any of the fruit cups or canned fruit I keep usually just in case I run out of fresh and don't feel like running to the market. It was almost 3PM by the time it dawned on me, but I threw some different shoes on, went to HEB & picked up a cantaloupe, a couple of plums, a couple of Gala Apples, and a HUGE Mango! I "hoped:" the Mango and cantaloupe were both good. I was almost too tired to get them prepared, but I finally decided I would get that cantaloupe scooped out, and cut up that Mango and they are both awesome! Sometimes the fruit is very good and sometimes very BAD! I hate when I pay expensive prices for fresh fruit, and it tastes like "cardboard". 

Then I picked up a red bell pepper, some tomatoes, and a cucumber. I've been eating salads again almost every evening for with dinner. So, I decided to add a couple of things that I've not been eating lately. THEN I FORGOT to get a new head of lettuce of all things. But, I still have enough for another salad tonight if I want one, so I am good until tomorrow at least. But, by the time I got to the house, and started to take those two sacks in, I was so tired I could barely pick my feet up off the ground. I don't know if it is just all of the running to Dallas Monday to see the Orthopedic Surgeon, plus last week the drive to see my Rheumatologist up there, and today I see my Cardiologist... but I feel just drained of all of my energy.

 I was on the sofa although awake but watching "True Blood" (I REALLY got into that series) and drinking coffee. I had quit drinking coffee for a very long time. Then after it began getting warmer, then I decide to drink coffee again. Usually one cup in the morning. But, it seems to upset my stomach, and that was one reason why I quit a year or more ago. It just does not set well sometimes with my stomach. My ENBREL CAME IN YESTERDAY! It was here on the porch when I got home from getting those groceries. BUT, I am about "half in fear" of starting it. When I was at my Rheumatologist office, we were talking about me being on a couple of the other RA injectables. It dawned on me, that when I was on the last one the Orencia, that is when I suddenly developed the cellulitis in both of the tops of my thighs. One week the left one began to have the lump in it, and then about 10 days later the other side in almost the same position began to have a lump. Later that turned into going to a surgeon, who had to open that mess up, and finally he messed up so badly (THANK GOODNESS he retired about 6 months ago) that I had to go to the wound care up at Charleton Methodist for 8 weeks I believe. They had to clean those out and put that special stuff in them to get them to get rid of the infection and finally close up, but I was dealing with that for almost 6 months or more. The Orencia, I feel was "contaminated".... I developed those places within a few days after the injection, in the about location I had been injecting them... and I felt it is was much of a coincidence that they came up a few days after the injection, in the same location from where I was doing those injections. 

Now, I do my B-12 injections monthly, and never have had any issues with those. And I am even more cautious that the doctors offices, when I give myself injections. I clean them several times all around on my thighs with the alcohol preps, and make sure everything stays completely sterile, and always cover up that spot with a band-aid for 24 hours. As most of us know we "carry" strep and staph or many of us do on our skin. It is almost impossible in the world we live in not to have some type of things like that on the surface of our skin. So, cleaning it is essential so not to "PUSH" those germs under the skin. Anyway, this one is in an "injectable pen" which is much easier to deal with, but honestly it to me hurts more than using a needle like I do with my B-12. I use the allergy needles for that and I never feel a thing. So, I put it in the fridge, and decided I would go back over all of the instructions today, and I am taking a shower in just a bit, so after my shower then I will take the first dose. I had to do this one once a week. My neck is definitely "worse". 

I believe I said that last night or night before last. LOL,,, I cannot keep up with the days anymore... it is 100 percent collapsed now and 1 of the ones he worked on before "may" be needing a bit of work, plus this time even on X-rays I showed several bone spurs. He said he definitely knew I had to be in pain, plus I can barely turn my head side to side. So, we are looking at probably the "middle" of April depending on how quickly the insurance approves it. Which they had already approved it last year, then due to Mom and then my hip fractures, I could not have the neck surgery. I think I just kind of "pulled" the muscles/ligaments around my neck and below it. It is much better today, except when I step a certain way. But, it is mostly doing okay thank goodness. Hell, now my elbow on the left arm, that was bad and I had surgery to attach the tendons back onto the bones, is beginning to "pop". It needed surgery at least 4 or 5 years ago, and I just took a couple of steroid injections, and decided to put it off. It is not hurting, so that is a good thing, it is just popping when I bend it or straighten it. If it's not one joint it's the other... LOL....

Tough Moments.... for me illness, I think Imay have had the West Nile Virus - and get some "grief" seems to be seeping in...

I realize I've not been here and I am so sorry I've not been keeping the blog fresh with new posts as of late. But,  spent a week (started last Sunday early morning) so ill, that I was not sure what was wrong with me. Yet, even though I thought several times of going to the Urgent Care, due to the tremendous amount of antibiotics and corticosteroids my body had endured over the past almost a year, I wanted to try and allow what bit of immune system I have left to try and fight it.... it is taking 6 or more days to begin to feel somewhat better, but from severe headache that lasted for almost 4 days, stiff neck, fever, severe pain in every muscle and joint, feeling like my joints were trying to "lock down at times", severe fatigue worse than I have endured in a long time, not have any strength to even go out to the store, or barely walk across my little home.... my head felt as if "sand" was in it, and when I moved it would sound as if it was "sifting" through my head, very swollen lymph glands in my neck, sore throat a bit, and pain in my rib cage in the back, all symptoms of many things.... but I read last night we have had a HIGH RATE of "positive West Nile Mosquito's" found just in the past couple of weeks...some seemingly close to my home, but they found them in 19 different areas of town, so one bite from anywhere around town by one could have kicked it off...


I cannot "be sure" that is what it was, BUT after reading that, then the symptoms, and knowing that my immune system is so "not there" I feel like that probably what was making me so ill this past 6 plus days... I am "better" today, but my energy is slim to none, and "mentally" I am "not wanting" to do anything... which is NOT like me...

So, I am not sure if some of the "grief" of losing my Mom in June is beginning to truly "hit" me... or if it is a mixture of several things, including being ill...


BUT, hang in here with me... I am HERE AND WILL SOON BE BACK POSTING INTERESTING articles, facts, and blogging away again....


Have a good weekend,  Rhia


Here are some articles and Symptoms of West Nile Virus:

http://www.activebeat.co/your-health/10-signs-you-may-have-west-nile-virus/?utm_medium=cpc&utm_source=google&utm_campaign=AB_GGL_US_DESK&cus_widget=&utm_content=search_fixed&utm_term=west%20nile%20virus

https://medlineplus.gov/westnilevirus.html

THIS ARTICLE IS ABOUT THE FINDINGS IN ENNIS OF THE WEST NILE POSITIVE MOSQUITO'S

http://www.ennisdailynews.com/news/archive-1019/

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A bit of catching up, been once again "ill" with "something" a Flare possiblly, but fever, severe body hurting all over, severe headache and NO energy!!!!!

Dropping in quickly to say I am still here! Been sick for two and a half days at least with yet again, fever, severe body pain all over, severe headache, and neck hurting, and my lower sides...plus NO energy...it was as if someone took a needle stuck it in e, and drained EVER BIT OF WHAT LITTLE BIT OF STAMINA I HAVE AND TOOK IT ALL AWAY! I could barely go from one room to the other at my house...so needless to say, I am BEHIND on painting, and everything. this house needs to be cleaned, including dogs bathed, and so forth... and I am way behind on getting the painting done... and I had been on a roll... not sure if it is just the heat that ha s zapped me, even though I have tried not to be in it a lot, or possibly just a continuing LUPUS and RA flare...


PLUS my ankles are "better" but that right one continues to swell if I get up and stand, walk on it a great deal, like painting, standing on the short ladder, or cleaning house... and I am sure the heat does not help it either... I felt as if someone had taken a ball bat to me and beat the hell out of me... honestly...So, I am headed to go and paint... and hope I can continue to "feel well enough" to get somewhat caught up o that, then tomorrow spend the day bathing the dogs, cleaning and and showering me! Anyway, keep my in your thoughts, and keep my kids in your thoughts and prayers...I know they have a an awesome trip to the river, for a week, but will be driving home I think tomorrow with their huge travel trailer in tow...so I wish them safety in getting home... 


This damned Lupus, RA, Sjogrnen's and the like all added up can really put a kink in your life, and you never know when it will hit you like a ton of bricks...

New Clnical Trial for Cluster Migraines sponsored by Cure Click

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Fatigue, Stress, Pain and the Realms of Autoimmune Illnesses bringing on more or worsened flares

I had just read and article about how many of the medications used for RA; along with Lupus, Sjogren's and many of the other autoimmune illnesses can possibly lessen the disease progression, when it comes to the joints, organs, and body. Yet, there is still a huge issue, that seems is not often controlled, or controlled enough with these. That is fatigue.

Fatigue, and I am speaking of the bone-tired, extremely weary, almost daily type of severe fatigue, that sleep, rest, nor many of the medications we use help or help enough. Those of us with Autoimmune illnesses know this so well. Even though our "minds" want to give us that extra "push" of energy, just like the "spoons" theory, or any type of "idea" such as comparing how many "units" of energy we have, it at times seems to never be enough. We run out of physical "steam" long before we complete all of the tasks we wish to.

It can bring a spiral of feelings and emotions when this happens. Guilt, hopelessness, feeling "less than", or as if you are letting a spouse, job, family, friends and yourself "down" because you just cannot shake that bone tiredness.

Even though we have many things that are out there to help try to battle the bone tired fatigue, and the almost unbearable pain at times, we still are never quite "over" it... or have total relief from any of it.

I've tried to envision having a period of "remission" since day one of finding out about the autoimmune illnesses/syndromes. I really can't think of any "long period of time" that "all" symptoms were gone. It just has not happened. I feel I battle 1,2,3 or more symptoms all the time. They are there underlying, waiting on the time when I am most vulnerable, and then come on with a stronghold.

It matters not, if it is Lupus, RA, Sjogren's, Raynaud's, Pernicious Anemia, MS... and the list goes on for 100's of different AI illnesses, one of them are always right in my face, setting on my shoulders, making my body scream out... I may not "scream" out loud, but my BODY is begging for a "vacation", a time of NO symptoms, to be let off the hook, to take a sabatical from the aches, pains, mental fog, fatigue, rashes, mouth ulcers, skin problems... all of them or even one of them feel like I could just lose it at any given moment. The old adage that we are never given more than we can bear... some of that maybe true... but when you are truly suffering from a daily, moment, hour, minute, breaths space, or with each step you take, something feels wrong. You "feel" whether physically, mentally, emotionally, or any of the combination of those may just push you right over the cliff! I went through that with the most horrid migraine headaches for many, many years. From the time I turned 17 until about 7 years ago, those headaches ruled my life for the most part.

I might be out headache free, whether working, dancing, out shopping, cleaning house, or whatever, and be hit with such a vengance of pain and nausea, that all I could think of, is whatever it takes - GET RID of this FREAKING HEADACHE!!!! Anyone who has any types of these headaches, or those that deal with chronic pain and/or illness(es) can totally relate. I have honestly heard of some with such intractable pain that take their own lives. They have reached a place that being on Earth they feel is just hell... and nothing will ever change that. I never thought I would be able to go even a week without one of the damned things. And I spent many day and nights, either at home, sick as a dog with them, or sick at work, with my head on the desk, or in the ER, begging for them to just make it stop. I went through every type of treatment, doctor, and medication known to man for them at the time. From pain medications (Butalbital) was one my doctors used quite a bit back then, to chiropractors, PT, other stronger pain medications, to an Ergot(which I am highly NOT able to take especially due to my reaction that I had, then my heart attacks) , to having the occipital nerves in the back of my neck injected... you name it, I tried it... and nothing really "worked"... some of them would at least get me to a place that I could withstand the severity of the pain and nausea, but other than when I was pregnant with my son, then 5 year later with my daughter, I thought I would bear the burden of those things on my back until eternity.

Well, I suffered for many years. They would wax and wane... from time to time, I would find deliverance from them, and other times, I felt I was constantly battling a severe headache. Yet, when I FINALLY begin to get treatment for the Autoimmune Illnesses, had several joint replacements, including a shoulder, and also surgery on the other shoulder and elbow... and also cervical neck surgery... and the adding of an incredible pain specialist, now I have what I call a "Lupus Migraine"... they come on when I flare badly with the Lupus. Yet, usually an injection of a corticosteroid, like Solu-Medrol will knock them out. It make take a few days, usually at least 2 days, sometimes 3... with that and then the "high step down dose" of prednisone for 10 to 14 days, will remedy one, until I flare again. I've learned over the years, that just like arthritis, autoimmune illnesses, chronic pain, joint issues... when the WEATHER acts up, you can bet I will have a severe headache, and of course usually the joint pain, stiffness, etc... all come on with high humidity, a dramatic change in the barometric pressure, a dramatic drop or rise in temperature, etc... 99% of the time, can be "diagnosed" by many of us before the weather even reaches us.

So, my own conclusion now about the migraines that I have are "inflammatory" headaches. That is why a corticosteroid injection can get them under control, whereas regular "pain medications" no matter how strong or weak... just will not reduce that inflammatory process behind a "Lupus Migraine"... and FYI that is MY OPINION... and what I have gleamed from them, and the injections. So, I don't know if physicians would agree, but I do know my PCP, takes me seriously. When I call with one of these headaches, he has me immediately come in, get the injection and the script for the step down dose of Prednisone.

Why the headaches somewhat "improved"... well improved is not really the term, they have "changed"... who knows... possibly any and all of the things that have come about with the AI and chronic pain issues... I just know now... or usually (I have had an extremely bad one, and I am not shaking it as quickly as usual.

But, I could probably name dozens of reasons of why they have migrated to being different, age, hormones, illnesses, medications, weather, living in a different place, stress, and on and on....