Sep 08, 2015
Well, it's been forever since I've been on this site, and I see a lot of new names I don't know, and as yet haven't seen many of the familiar ones. I have been very occupied with life's trials and changes. The biggest has been my mom being diagnosed with Lung Cancer about a year and a half ago. I took on her care while she stayed at her home, undergoing radiation treatment. She only found out she had cancer due to pain in her lower leg. A tumor had eaten through her femur bone. The radiation treatment didn't help the leg, which progressed to the point that I knew she had very little time unless we could get it amputated. I became her doctor - advocating for her, finding her a doctor who would amputate, which she had done just before it was too late. She moved in with me and I cared for her here for the last 9 months of her life. She died this May 15, 2015, 2 weeks before my first granddaughter was born. It was going to be her second great grandchild, and she so wanted to hang on to meet her. It was so sad - we were not only mother and daughter, but best friends. My granddaughter, Lily, (Andi's daughter) is now 3 months old, and I'm trying to manage my mom's estate, get her house sold and manage my own affairs. (Very hard)
I had been trying to focus on her and care for her to the best of my ability, while knowing that I wasn't doing very well myself. I had to hold on for her. My doctor retired, my new one let me go, due to not feeling he was able to help me, and Missouri Medicaid didn't seem to have a single doctor who would take me as a patient. Since the first of the year, I have just now found a pcp, but she won't prescribe anything controlled (and I've been on quite a number of controlled meds) - she wouldn't even prescribe my insulin! I tried to find a pain clinic, but still haven't found one who will take me! Thankfully, I had enough pain medications to last at least a year, having been very conservative in their use. But other meds - xamax, and Ritalin - were more problematic. I've gone cold turkey off xamax before by mistake (due to having pneumonitis from aspirating and having too high a fever to care for myself), and it's not a good thing. It's a very dangerous drug to go off of suddenly. I've been trying to use the supply I have and slowly reduce the dose. I want to be off of the drug anyway, so this is a good way to be forced into it. It's not easy. But, with increased disability from ms, and increased problems from Systemic Sclerosis and my other diseases - nothing has been easy.
Add to all this, the stress of losing my mom and having to get her house repaired and do all the legal and financial affairs necessary for my mom's estate - and you have a recipe for disaster. I've been handling all of mom's affairs for the last 2 years, but it's different now. She has a lot of stuff to take care of with her big house, and if I don't get it unloaded soon - I'm going to have to let it go into foreclosure. Through all this - I hit a brick wall. I've had it happen over the last ten years, more and more often, but now, instead of there occasionally being times of intense fatigue surrounded by more normal times - now I rarely if ever have "normal" times, and the times of intense fatigue are surrounded by times of even more intense fatigue. This - without Ritalin.
Well, for the first time since I was diagnosed years ago - I have a Neurologist! I saw her Friday, and I really like her. The first and only other one I've had (other than the many I saw before they thought of ms), is the one who said my case was so bad, and so complicated by so many other diagnosis - I needed "fairy dust". Those of you who know me or remember me - may remember that. This new neuro is amazing. She acts like a real doctor - lol. I was pleased and surprised to be able to actually have a specialist in the crazy state of Missouri. She said I'm in SPMS, which was obvious to me by the progression of my numbness and weakness of my right leg. I haddeveloped foot drop years ago, but it gradually became really numb and tingly, with the muscles getting weaker all the time. It has now become painful and very bothersome. Cognitive difficulties, extreme, paralyzing fatigue, as well as changes in mood have made life so much harder. I'm worried I am not going to be very effective for long. I'm hoping this doctor can at least help me sort through some of the different processes going on so I can stop living in denial - thinking if I just eat right and exercise etc., things will get better.
I believe very strongly that those things are true - but they aren't the be all, end all, that are going to make the diseases go away. My heart has gotten worse - there's a septal deviation - it's become aneurysmal - and my GI tract is a disaster. I haven't been scoped in a while, so I don't know how my Barrett's is doing. I did have a Breast Cancer scare last year. A mass which changed the shape of my right breast appeared and a surgeon removed it, thinking it best, since it appeared malignant. Turned out to be a condition which mimics malignancy and can become malignant. It has come back, so I need to have it checked and keep on top of it.
Later today, I'm having an infusion for my Osteoporosis which had gotten much worse. Last year, I lost another 17% of bone and am in a fracture risk category that scares me. I need to be up and around to help things! My back is horrible and causes screaming pain and I don't know what to do about it. I've lost 2 inches in height, and have Scoliosis, DDD, neural foramin narrowing, osteophytes, Tarlov Cysts in all four sections, as well as hemangiomas. It's quite a mess. My Diabetes hasn't gotten much worse though, and I am better able to manage my aspirations at night, which has kept me out of the hospital for quite a while. THAT is thrilling! I was so worried that I'd be in the hospital when I needed to care for mom - but maybe the fact that I knew I couldn't - made me extra diligent in keeping my bowels moving a bit and hence kept things from backing up - all the way into my lungs. Whatever the reason - having something be better is so wonderful.
My son is moving out in a month which has me worried. I still need him to help with my home, but he needs to get out on his own. I will either manage, or figure something out - or not. There's not a lot one can do about the inevitable. I'm trying to stay as active as possible, but lately, it's been almost impossible. I need to sell mom's house, yet for the first time in my life - I can't MAKE myself act. Lying in bed isn't going to help me - certainly not my osteoporosis - or anything. Disability breeds disability. My neurologist gave me a Rx for Ritalin, but it isn't even enough to get things moving.
Sorry for writing such a long journal entry, but no one has to read it - that's the beauty of this set up. I am going to try to enter into the community again to get some support and give support, which always helps. I look forward to catching up with those of you I've known, and meeting those of you I don't know. Anyone lurking in the shadows who remembers me - please shoot me a note. I'd love to hear from you. I hope you are doing well - as well as possible. Those waiting for answers - a bit of advice - if you have ms - it will find you.
There isn't a lot that will help MS as I write this. None of the drugs truly help prevent disability, if it's going to come. Even if it stops exacerbations or shortens them - disability and damage continue in the background. Studies have shown repeatedly that the DMARDs don't do anything to change the ultimate status of a patient with MS - Morbidity nor Mortality. It may reduce flairs, and if that in itself is a good thing - go for it - but the stress of searching for answers can be so stressful. I never looked for any of my diagnosis. I had symptoms bad enough for me to need to see doctors - they never did the right tests, nor got things right (at least for years), but it isn't like failing to find cancer - or an infection - in time to do something about it. MS isn't a disease that needs treatment to keep it from doing damage. That's going to happen anyway. Now, if you have symptoms severe enough to suspect that you might have something that needs immediate attention - that's understandable, and should be pursued. I guess what I'm saying is that over the years, I've seen many people on various forums stress about symptoms and search for a diagnosis when there isn't yet enough evidence to give one. I've been there with other illnesses. I understand! We all want to know what's wrong with us. But sometimes it's counterproductive to want to know so badly that you focus on what's wrong with you over focusing on what's right. When we focus all our attention on illness - it has a way of making us more ill. Our minds are the strongest organs we have, and we must focus them on all that is good, all that is pure, all that is lovely, all that is of good repute.... (to quote Philippians). We are what we think - a very powerful thing - not to be taken lightly. So, those of you Limbolanders - be thankful that there is as yet, not enough to give you the diagnosis of MS. Keep notice of your symptoms, write them down - their severity, duration, location, etc., so you can report accurately to a doctor when necessary - but the rest of the time - think about all the good in your life. Believe me - there are some of us out here who wish there were more good times left.
My granddaughter is such a wonderful gift. Even she isn't enough to dig me out of my energy deficit - but loving her is a gift I am so thankful for. Most people who see me, or even know me, don't know a fraction of what's wrong with me. At one time in my life - that bothered me. I wanted to not always hear - "but you look so good". Now, I love hearing that! It all depends on what side of health you're on. If I heard "you must feel awful, you look so sick", that would be horrible. I lost friends, responsibilities, credibility, and opportunities because of illness. I would do anything to get it back. I am not given the chance to do things, even when I feel up to it - because people are too afraid I'll get sick and have to abandon the job, or end up in the hospital and fail in the project I'd started. It has isolated me from all I loved in life. Hold on to your life in every way you can. If you end up having MS - some people have very mild cases of it and it doesn't horribly disrupt their lives. Others aren't so lucky. But, you will know if it gets that bad. And, at this point in time - nothing can be done to help you that's more effective than staying active, maintaining friendships, a spiritual connection, and a healthy purpose in your life.
Blessings to everyone, and prayers that those of you wanting answers find them, but those able to do so, maintain healthy connections to their friends and families and remain a support for others - nothing brings you more joy than to bring joy to others! Those suffering - I pray for you to find strength. For me - only God can give me that support right now, so those of you who are willing - I would love your prayers.