Tuesday, October 16, 2012

Rising to the Occasion for My Readers (that are to come)

I realize that not one person has been "invited" or actually became a reader of my blog as of yet. There are many reasons for that, most of which although it has been "up" online for a rather long while, I have not been about physically for the most part of this past couple of years to think about sitting long enough at my computer to be able to write a blog. I may have been able to write some, here, there and yonder, but I know that readers, just like myself, want to read the latest and greatest. As a reader, you want to know the entire "agenda", not just a few pieces here and there. Thus, my goal was to find out what exactly all was wrong with me, (or so I hoped), then do what I needed to do, to get out of pain, as much as possible, and get as well as much as humanly possible. Although, anyone suffering with chronic pain and/or illness(es), realize that trying to get all of the facts together, then correlate those with all of the specialists, tests, medications, and research on the patients part if they really want to know exactly what is happening with their own bodies, that can take an extremely long time. The good news is we have recently made so many leaps and bounds as far as diagnostic tests, blood work, scans, more information and research to help doctors as well as patients understand the workings of these life altering, often life draining, and definitely life challenging illnesses or syndromes. As you have probably gained from this already, my "medical" issues are many. That includes Lupus, RA, plus degenerative joint and disc disease, as well as a couple of other Autoimmune Illnesses, Sjogren's, Raynaud's, along with other health issues including two heart attacks. The first was at the age of 40, yes you read that right, I did type 40 years old. The 2nd one, that probably could have been avoided if things would have been done differently, was actually 10 years later, at the age of 50. I was already in the hospital, and had been seriously ill with another health issue, and had the second heart attack mainly due to the severe amount of stress put on me with the other very serious ill condition I had been in for about 6 weeks prior.
If what knowledge I have now, I would have had back when I was 35, I may have avoided some of the issues with illness I have been dealt. There are times, and I must say fairly often times, that I get very angry about all of the years I spent at doctor's, countless scans, X-rays, blood work, even hospital visits throughout my life, from the time I was about 21 until I was 47, not one physician had ever indicated that all of the joint issues, the chronic pain issues, the severe migraines that plagued my life enough to cause me to be fired from a job I had been on for over 6 years, and I was terminated lying in my bed at home, ill, with a note from the Emergency Room doctor that I could NOT work for 3 days or so. There were many things in my life that either happened, and others that did not happen, or I did not get to participate in due to illness. But, what exactly was happening to me, no one could say for sure.
Being a woman that was having these types of health issues during the 1990's caused me even more grief when it came to the majority of doctors during those years. Even now, women continue to get things said to them like "Oh, you are just stressed", or "I think it is depression", or maybe you should change jobs, get a new husband, move out of town, do anything differently, BECAUSE YOU are the problem. It is just "all in your head". Oddly, men very rarely hear those words, "Oh, it is all in your head!" For the most part, men can walk into a brand new doctors office, with just about any type of symptom known to man, and I would bet on the average, those men are taken very seriously 98% of the time. You just do not hear a "man" or "woman" doctor for that matter, telling a male patient, they are stressed, depressed, and making up how they feel!!! Now, I am not putting down the notion that STRESS is a huge part of our health problems especially in the United States. With the "large picture" to "do more, be more, give more, work more, make more, have more.... more, more, more... both men and women, as well as many of our kids are very stressed out! The rapidly fast paced society we live in is enough to make even the most passive person be ready to pull their hair out by the end of some of our busy days, that seem to be 58 hours long, and still not enough time to do it all. So, both depression and anxiety are two health issues that do need to be taken very seriously. BUT, those two illnesses cannot be used as "scapegoats" for laziness on our health care professionals part to do the tests that are needed, no MORE but NO LESS! A 5 minute conversation, that is usually one sided on the doctors part, does not usually mean a very accurate diagnosis for a chronic long term life altering disease. These are not easy to diagnose, and they all have symptoms that can be similar to other illnesses. But, with the right doctor, that truly hears and listens to his patients, that does take time to make the right decisions as far as blood work, any scans or X-rays that may need to be done, or even a biopsy or certain type of surgery maybe needed in ordered to find out the entire issue. It also may take several physicians that specialize in different fields to discover, determine, decide, and come to conclusions together as to what is going on with a patient, especially when it comes to these chronic illnesses, that are often rare, and for the most part, not a great deal known about them... It also takes a patient that is willing to get right into the middle of the whole thing, look up all of the information they can, online, in books, at the library, through magazine articles, and then also willing to ask all of the questions that need to in order to get their own answers to suit them. For me, more often than not, no matter what is going on with me, let's just say as of lately, I began about 7 months ago having sudden "double vision". At first I did not give it much thought. I do not sleep very well with all of my health problems, so I thought it could be from lack of sleep. I went along about a month, and it was not resolving itself, so I did some of my own research as to the possibilities, finding out it could be a number of things. So, I went to my regular opthamologist, who does a vision check on me annually due to the Plaquenil I take for the Lupus. The medication can cause retinal detachment, and even though rarely, I still must have an annual check to make sure all is well on that side. I realized several years back my vision was beginning to get much worse, as far as reading and close up vision, but with my age getting around 50, that is not all that unusual. I had a thorough exam, and was put in a different type of glasses with "prisms" in them. All of their tests did not reveal anything wrong, but the prisms are used to help with those that have double vision issues. It took me literally weeks to get used to those glasses! I would get sick to my stomach if I went it to a large store, with lots of open space, before I got used to them. They just caused everything to be thrown off, from how it looked when I looked at the ground, bent over, read, or even watched television. It was totally crazy, but I did get the glasses, and they did help me to see better. At that time, my regular eye specialist wanted to refer me to yet another specialist, and in fact one I had never heard of up until now. They wanted me to see a "Neuro-Opthamalogist". I knew when I heard that title, first of all it was a highly specialized field. Secondly I just knew the possibility of finding one close that also took my insurance was going to be like pulling teeth! So, at that time, I was already facing some type of surgery (we just did not know exactly what kind yet) so I put the "double vision" in the back of my mind, wore the new glasses, then went on to have a 4 level cervical spinal disc replacement and fusion, which was done this past June. I had been living in a living hell with severe shoulder blade pain, pain radiating from the top of my arm, down and around to my thumb. I was not able to have much use of my right hand, and of course that is my dominant one, and it made life miserable. I had already undergone a had already had a complete "reverse shoulder replacement" in June of 2011, that was supposed to correct all of the weakness, pain, and give me back the use of my right arm. Yet, I was not able to even lift my right arm enough to put deodorant on under it, or shave under it. There was no way I could reach behind my back.The worst was when I had to stop the rehab therapy I had been doing because the pain was just too bad.  Then it was another several months of trying to figure out what was causing the right shoulder blade pain, the a pain running down my arm to my thumb, the weakness, and basically giving me an arm that was totally useless to anyone. Once again, I was dealing with a doctor, (and folks this is 2012) that absolutely despises any of his patients trying to "self educate" themselves on what is happening with their own bodies. He just hated the fact I went online, knew a great deal about that special type of shoulder replacement, he hated the fact that I knew about anything.Then when the shoulder implant did NOT in fact "fix" of all my shoulder pain. After 6 months of doing very well after that surgery, suddenly I began to have pain again down into my shoulder blade. It was a severe "burning sensation" that later ran down my right outer arm down and around to my inner wrist and into my thumb. Before that the majority of the shoulder pain and weakness had improved dramatically, and it had been coming along very well with me rehabing it at home on my own. One day 6 months after the surgery, I had went to put gas in my Mom's car (yes she cannot put gas in her own car - never learned how to) I went to twist the cap on to make sure it was locked, and I felt something like a "snap" in my right arm, in between my elbow and shoulder. It almost gave the impressions of a rubber band when you stretch it and let go. I even almost "heard" the noise. At first, of course I was very upset that I had done something to that surgical implant, like pull it away from the bone etc. But, at that time the pain I felt was more like a tight squeezing feeling just in my arm where that "pop" had taken place. I was definitely concerned about it, but I knew I was going back soon for another check up on it, so I thought I would talk to my doctor about it then. Well, within 2 days, my shoulder began to hurt. All of that burning in the blade itself was there, but my entire arm felt sore, it hurt almost like "bone pain" in the shoulder, and that sensation of burning ran down to my thumb. We went through X-rays that showed that everything was in place as it should be, as far as the shoulder implant and hardware in there appeared to be normal. Due to my "pain pump" (which I will talk about in another post) I am not allowed to have any MRI's... ever... thus I went and had a CT scan along with a myelogram of my neck. I have had neck issues for the majority of my life, due to a 4 wheeler accident that I had when I was about 26. But, in the past 4 years or so I have had a great deal of degeneration of several of my discs. The scan did show some of the damage, but the doctor was still not really satisfied with just those scans and X-rays. So, I went through a nerve conduction study (NCS) and an electromyogram (EMG) which revealed that there was significant nerve damage. Yet, even with that evidence and what the CT had shown, it still was not exactly apparent if my CERVICAL SPINE was the cause of my latest shoulder issues. I knew I had neck problems. I had 2 other MIR's from 2006 and 2007 that showed the degeneration of several discs at C 3,4,5... then in 2007 it was those along with C-6 that also was in with the entire bunch. Even though there had been no bone spurs and so forth showing, the evidence of the specifics of symptoms and pain I had was sufficient enough for my Orthopedic Surgeon to feel like the problem was definitely nerve impingement coming from the herniations from C3 through C7 actually, with evidence of two discs entirely needing to be "replaced" (more "foreign" parts to add to in my body), and probably fusion of all 4 of them together. So, after feeling just a year before like I was "through" with surgeries for hopefully a long while, I was not only facing yet another major surgery, but one I had NOT wanted to ever even have to think about, and that was any type of spinal surgery. We have so many horror stories, and all of us have heard them about "failed back surgery", (they even have a diagnosis of "failed back surgery", just like a diagnosis of arthritis, or a torn knee cartilage), that I had always said I would NEVER no matter WHAT EVER have any type of surgery on my neck or lower back. Even though I do know several people that have had lumbar or cervical surgery and came out just fine, we usually have many more just the opposite. From just talking to someone in the local market to what we hear on television, and all of the massive amounts of information on the internet, we are inudated with more negative than positive results. So, this one was extremely difficult for me. I argued with myself over the subject for a couple of weeks. Yet, when I weighed all of the facts together, which #1 was I could no longer live with the pain, #2 the spine issues were only going to get worse, never better. Without going through with the procedure now, would mean I still would face it shortly. So, the option of putting it off, was kind of took off the table. Thank goodness I did listen to my doctor, to Jim, and moreover to myself. Now I am happy that I made the decision to go ahead and have the cervical disc replacement and fusion done, or honestly I would not be here typing this out. I got to the point I was not able to stand the pain in my shoulder blade as I tried to type. I would not be here 5 minutes even just checking email, and that intense burning began. then it may last hours or even a day or more, when it got started. Everything seemed to aggravate it, whether I just had the arm by my side walking or I was trying to use it to clean or stir something in the kitchen. so, even though it was a great deal to go through, not being able to drive for 6 weeks, well actually 8 for me due to having the "soft" bone where the screws were that hold the "hardware" in my cervical spine. I also have osteoporosis, which is extremely bad, due to y "genetic" background for the first part, and for the second due to having to be on Prednisone, even a small dose, has also caused the issues of this illness to be even worse. I was totally shocked when I had a bone density test about 3 years ago. Never did it dawn on me I would have any issues with that kind of problem. But the test came back actually "severe" as it can. So, I went on medication for it right away that I take weekly in a pill form. "Fosamax" is the brand name for the medication. they have just came up with a generic brand, which saves my insurance and myself some money for sure. But, it does not even really "repair" the brittle bones, but it does make some of it harder so that a fall, or something like that may save me from a horrible break in my pelvis, hip, wrist etc, But, of course NOT falling at all is the best. Yet, with all of the issues from RA to Lupus, to just have all of the implants can cause you to be more apt to taking a fall without being extremely careful. Anyway, I endured the 8 weeks of that hard collar, not being able to drive or bend over, and other things that I was so used to doing I could not do. One thing that was a positive light from the surgery well before I began to see results from it, was the fact I REALLY needed to WALK and QUIT SMOKING. I had already basically quit smoking anyway. I am what they call a "weekend smoker". I am able to take a puff or two a day, and nit have to smoke anymore than that. the walking, well, I already have been an avid exerciser, and ride my inside exercise bike for 45 minutes to an hour daily, without miss for the most part. But, walking was something highly suggested on all of the sites that talked about healing from the cervical surgery. Since I could not drive to my regular walking park,  one morning I started walking up and down our long driveway. I am fortunate enough that we do have a fairly long driveway, that with about 35 to 45 minutes gives me quite a workout. I started doing that just after the surgery and have never stopped. I religiously walk, no matter weather, unless it is extremely cold or rainy, I walk, which is in addition to continuing the daily bike ride also. So, I get my exercise in daily, which I am quite proud of. I look forward to the sounds of "Matchbox 20" in my ear, and that "trip to anywhere" I want to go for a little while. I maybe silent and absorbed into thoughts or I could be singing, or more than that talking to myself about one think or the other going on at that time. I realize often that even though I feel so weak, and fearful, I am forever more strong especially mentally and emotionally with every medical thing that comes into my life that I have to endure...I close this one and a new subject comes soon... I will begin to publish "daily" pieces even though I may not finish them at that moment also... but complete them in a day and then begin another. I want to keep this interesting for YOU the reader, as well as try to enlighten you on the aspects of life with a Chronic Illness.

No comments: