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[user=13]Parisa[/user] wrote:
Lori,
Don't feel bad. Only a saint, wouldn't curse this disease and what it has wreaked upon you physically and emotionally. Be mad, be sad but continue hanging in there because I know better days are in your future.
Even a saint would curse this disease! Gregory the Great – St. Gregory lived in the middle ages and is credited for maintaining civilization through some of its darkest times. He had some type of terrible rheumatic disease that kept him confined to the bed for days at a time (can anyone relate?).
He said of his disease, “I die daily, yet never die.” I don't doubt for a minute that he felt all the same things we feel, yet his life and work were still valuable.
I often pray that I will remain well enough to continue to love and serve others. Not much else matters. On the days that I can't, and they are still all to frequent, I just try to distract myself so as to not feel mad about the time lost. I find a cozy spot and use my laptop or a book or often just watch a series of DVDs to keep my mind off the pain and the immobility!
Once you have mastered dealing with the pain – through various coping mechanisms including pain med use, it helps, but I told my daughter, “I can't figure out how to deal with the lost time.” Well, I guess it is like money lost in the stock market… you never really had it in the first place, you just thought you did. LOL! Learning to let go is a big part of life's lessons, and learning to take help is, too. I try to remember how good it makes me feel when I can be of use to someone in need. When I am in need, it gives someone else that opportunity to feel good, and it gives me a chance to take help gracefully and thankfully. Why is that so hard to do?!
These are the important things in life, so perhaps the diseases and difficulties we face are all about learning them, for ourselves and our loved ones!
For anyone interested, I found the book The Problem of Pain by C. S. Lewis to be very helpful in understanding why pain is a part of our world and why a gracious God might just think it is worth allowing. It doesn't stop me from being mad at Him sometimes. That is okay, too, I think! 😉
BTW, what awesome post to you fellow RBF folks. You really know how to rally around! Thanks for posting, Lori, and thanks for all the great advice everyone!
Lori, I prayed for you last night and I will continue to. I really agree with the folks who said that you need to ask for help when the fatigue is really bad AND get painkillers that work for you . Women in general are not good at letting others look after them and getting what they need to be more comfortable! We don't want to worry our families and we don't want to give in, even temporarily. We need to learn that we're worth some TLC – and that the world will continue to turn when we let go for a bit. Hope things are brighter soon.
My husband told me that he feels my illness is meant to teach him a lesson. I told him, if that's the case, pick up the pace and learn it–I want to get well!! 🙂
At my most painful times, I can relate the most to Job in the Bible; this disease has totally blind sided me. Knowing the end of the story gives me strength and perserverence!
Take care,
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
[user=442]Trudi[/user] wrote:
My husband told me that he feels my illness is meant to teach him a lesson. I told him, if that's the case, pick up the pace and learn it–I want to get well!! 🙂
One time my husband was pointing out that I was being “less than reasonable” on something and I told him, “it's Lyme-rage……..look it up!” How awful was that? 😯 There are days that are better than others in rolling with this stuff, but sometimes I reach my limit on being a good sport. Fortunately, pshcho-b. doesn't come around too often.
Thank you all so much for lifting my spirits! You've all helped me out SO much. Reading all your messages made me realize how much we can all relate to each others pains and frustrations. I laughed, cried and found peace. You all really touched my heart. I wasn't sure about posting my feelings like that, but it felt good and I'm now glad that I did. Thank you for not making me feel ridiculous!
I have a lot to be thankful for and this group is amoung the top.
For those of you that asked some questions I'll try to remember and answer them here.
Yes, I do have a pet. I have a little yorkie girl and she brings me much comfort. She seems to know just the right spots to lick when I'm feeling pain… and she curls up on me all the time. I love her warmth!
I do have Hypothyroidism and take a generic synthroid for it. I should get my levels checked again, as everything I look up about feeling hot to the touch but having below normal temp readings, all refer to Hypothroidism or Metabolic disorders. My Drs. seem clueless. Does anyone know what kind of specialist could help me figure this out?
I don't take anti-inflammatories as I don't have any visible inflammation. Does it have to be visible to be there? I don't know the answer to that. If I do need to take them what is the safest and best brand to take. If it will help me with my fatigue I am willing to take it.
I'm starting to wonder if maybe I have some sort of Lymes Disease. My main problems are stick neck, stiff knees, fatigue, depression, being cold all the time. Gosh I wish I had a good Dr. to help me figure this out! Can you have Lyme Disease and be Sero-Positive on your anti-ccp test? Would having Lyme Disease also cause you to test Sero-Postitive? The more I get into this, the more I realize I have SO much more to learn! My mind is boggled at the moment!
I emailed Dr. S about a week or so ago to tell him I wasnt feeling too great and maybe it was time for another round of IV's but so far I haven't gotten a reply. Does anyone know if he is on vacation?
Thanks again for the support! I love how this group comes together for everyone!
Lori
[user=212]Time_of_my_Life[/user] wrote:
I'm starting to wonder if maybe I have some sort of Lymes Disease. My main problems are stick neck, stiff knees, fatigue, depression, being cold all the time. Gosh I wish I had a good Dr. to help me figure this out! Can you have Lyme Disease and be Sero-Positive on your anti-ccp test? Would having Lyme Disease also cause you to test Sero-Postitive? The more I get into this, the more I realize I have SO much more to learn! My mind is boggled at the moment!
Hi Lori,
Just back home from being away and playing catch-up.
Stiff neck is a pretty unique sign and unless one has a neck injury of some sort, Lyme should be a serious consideration. It was one of my first signs I was infected along with the two rashes I got and is classical for Lyme. The spine isn't normally affected in RA and, if Lyme isn't a consideration then would likely be more connected to a spondylarthropy (although, this grouping of diseases can emerge with Lyme, too).
The stiff neck of Lyme is a part of the neurological component of Lyme and is called “Lyme meningitis.” It's not as serious as the other forms of meningitis, but it's not pleasant either and needs treatments specific to Lyme. I couldn't turn my head at all. Although an early sign of Lyme, it can also reappear down the line as part of herxing or unresolved symptoms (i.e different abx needed).
Knees are pretty typical of Lyme, too…the large joints are the ones Lyme loves. In fact, on Long Island, where I was attending a Lyme conference this weekend, well before Lyme was given its name in the mid-70s (due to an overwhelmingly large cluster of kids and adults who came down with JRA and RA in Lyme, CT) they called the condition “Montauk knee!” This was because so many people were limping around Montauk, LI and no one knew what it was! My knees have been the worst and most persistent all along, but after 2.5 years are finally doing much better.
Lyme causes crashing fatigue (CFIDs has been linked to Lyme), also, as well as all sorts of other symptoms affecting body temperature/metabolism. Babesia, a red blood cell parasite, a protozoan coinfection of Lyme that needs specific anti-protozoan treatments. As Linda mentioned in another thread today (re: the Dog Town rescued dogs with babesia), it can cause anemia and spikes in temperature and this would present as a deep chilled sensation along with chronic fatigue (a flu-like feeling).
Of course, not saying you have Lyme as I'm not a doctor, but it's worth considering, as a combo abx approach may help you resolve these remaining symptoms. Some of the antibiotics used for babesia include flagyl, mepron, azithromycin and plaquenil (plaquenil is an anti-malarial and malaria is also a protozoan infection, which may be why rheumatics respond so well to this drug).
Lyme is known as “the second great imitator” (the first being syphilis, which is also a spirochete and can mimic any disease under the sun). As such, it can cause all sorts of immune and metabolic problems and being seropositive for RA, sclero, dermatomyositis, lupus, etc, is very common. I was highly positive for RF and anti-CCP, but with combination Lyme treatments, these have gradually been normalising.
I understand that Dr S doesn't treat Lyme, so if this is a concern for you, then you'd likely have to seek out a Lyme Literate MD (LLMD). I just looked up North Dakota on the LLMD list I have and there aren't any for your state, unfortunately. If travel is an option and you'd like a listing for some other states, then let me know and I'd be happy to send this. Like the AP doc list, there are more experienced physicians and less experienced ones, so unless the docs are known to us, it would involve some research.
If you go to the http://www.canlyme.org website, you'll see a symptom list you can check out. People experience some or a good number of these in different combinations and it all depends on what Lyme coinfections may be in the mix.
Lori, do hope you find your answers. Try not to kick yourself too hard, because these infections can cause so many things that can literally morph us into people we no longer recognize. With the right treatments, however, they can be beaten back enough so that the immune system can strengthen and keep things more in check.
You're in all our thoughts!
Peace, Maz
(((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))))))))
Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.
Thank you for the information Maz! As always you have a wealth of it! I went to the site you mentioned and was astounded by how many of those symptoms I have!!!
Could you direct me in the right direction as to how I find a LLMD in my area? You mentioned North Dakota on your reply post but I live in South Dakota so maybe that was just a misprint. 😉 I could travel if I had to. Maybe there is one in Minnesota or Iowa if not in South Dakota? I can't seem to find a listing.
Thanks for your help. I hope you enjoyed the convention!
Lori
[user=266]JBJBJB[/user] wrote:
(((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))))))))
Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.
Thank you JB! You're such a sweetie!
And your quote is SO true. I often send that one to my daughter when she is feeling overwhelmed.
Speaking of my daughter. She just got an acceptance offer to grad school at UND! She was so excited!
Hope all is well with you and that you are feeling better!
Lori
[user=212]Time_of_my_Life[/user] wrote:
Thank you for the information Maz! As always you have a wealth of it! I went to the site you mentioned and was astounded by how many of those symptoms I have!!!
Could you direct me in the right direction as to how I find a LLMD in my area? You mentioned North Dakota on your reply post but I live in South Dakota so maybe that was just a misprint. 😉 I could travel if I had to. Maybe there is one in Minnesota or Iowa if not in South Dakota? I can't seem to find a listing.
Thanks for your help. I hope you enjoyed the convention!
Lori
Hi Lori,
I have the Turn The Corner Foundation LLMD list which unfortunately doesn't have any LLMDs listed for either North or South Dakota (yup, apologies, a misprint above ;)).
I went onto Yahoo Groups! and they have several Lyme support groups listed for your state:
http://groups.yahoo.com/search?query=lyme+south+dakota
I found my LLMD by joining a Lyme support Yahoo! group for CT and it's good to talk with people local to you, as often they can give you up-close-and-personal first hand experiences with docs they've seen and can offer very good referrals. South Dakota is just one of those states which has a shortage of docs, by the looks of it, but you may find someone on one of these groups who can tell you the best docs closest to you, even if out of state.
I will PM you the list for both MN and IO. The Iowa Lyme disease group is listed and I will send you that, as well, because there is only one doc in Iowa and if you contact this group they may also be able to give you some good first-hand referrals. It may have even been this group that was featured in the “Under Our Skin” movie.
I'll put these lists together for you and send in a PM in few mins. By the looks of it, you will probably have to do some calling around to figure out who may be Lyme Literate and who is just listed because someone got antibiotics from a doc somewhere. Infectious disease docs are guys I'd personally stay well away from, as these are the guys who deny chronic Lyme. When doing your research, if you can speak with the physician's nurse, you might get a better picture of what services the doc provides. If they just do standard testing, then probably not worth looking any further with particular doc. LLMDs will either make a clinical diagnosis or will send blood away to a specialty lab like IGeneX to test for borreliosis and coinfections, so asking these sorts of questions might help in terms of figuring out who might be better than the rest.
All the best in figuring this out, Lori!
Peace, Maz
Hi Lori, Glad you're feeling a little better. You can definitely have inflammation w/out any visible swelling, especially in the large joints. In order for inflammation to show up visibly in joints like the knees, it has to be pretty bad. Not true so much in the fingers and toes. Whether or not you have visible swelling, you should be on an anti-inflammatory to decrease the inflammation surrounding the colonies of bacteria or protozoa, otherwise the antibiotics can't get thru and are not effective.
Endocrinologists are the doctors who specialize in metabolic disorders like hypothyroidism, diabetes, etc. You can have an AI disease that affects the thyroid, it MAY be that when the antibiotics start to work you will be able to decrease your synthroid, it depends on the amount of damage. The flip side is that your symptoms would probably worsen during the herxing reaction.
Ditto what Maz has said about getting tested for Lyme.
I wonder if Dr. S would be able to help you with your thyroid. Many people do better on dessicated thyroid like Armour, and with a TSH about 1.
He's been around for awhile, and might be open to using Armour.
Lori, you look way too young in your picture to have a daughter going to grad school. Are you sure it isn't YOU going to grad school? 😉
[user=732]m.[/user] wrote:
Lori, you look way too young in your picture to have a daughter going to grad school. Are you sure it isn't YOU going to grad school? 😉
Oh my gosh M. you just made my night! Definitely put a smile on my face! 🙂
I wish I was 22 and had my whole life ahead of me, just waiting to see where it took me! I would love to go back if I could!
I will have to ask Dr. S about the armour for my thyroid. Thanks for the suggestion.
Lori
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