I need support before I drive my family nuts :)
I everyone....I would like to update you all on what is going on..I am having a hard time lately..but doing the best I can...
I went for years with UCTD diagnosis...unable to get the Lupus diagnosis...with my Rummy saying she just can't get the blood work to back it up..but clinically my case is very bad...yada yada..I am sure you know what I mean...misery..feeling like it is in my head. I worked full time, full time graduate student, single mom of three kids (two of them disabled, actually). It all came to a head this spring, I got pericarditis again for the fourth time in 3 years and just could not word. I was overwhelmed and my doctor put me on temp disability. This is when she had another EMG done with my neuro..b/c my neuopathy was worse too..and legs and feet were much more week. My neuro told me right there he was certain of the vasculits diagnosis from the EMG and my history. He hesitated to have to nerve biopsy done..b/c he was pretty certain about the vasulitis..but my rummy wanted to biopsy done..which seemed pretty prudent..to ensure the diagnosis and figure out which meds to be treated with.
Last week I had the nerve biopsy and now I can hardly walk!!! I spent memorial day weekend in the ER in the worst pain of my life..(nerve pain in my foot and leg)..of course I experienced ER people thinking I was a woman complaining of a post surgery annoyance....and I had to wait for hours in excruciating pain...like "cut my foot off pleas now" pain. In the meantime, I was on 40mg of prednisone for to treat the vasulitis so I was a mental mess..anxious and crying and angry at the world.
I have been on bed rest and on vicoden for a week. Vicoden doesn't really help too much and I am super careful with those type of pain management medications because I am in recovery (not for pain meds but for alcohol...but my recovery is very important..so I am careful with potentially addictive pain medication). I went back to the surgeon and he told me because I already have vasulits and probably lupus...I may have triggered some chronic nerve pain problem or advancement in the other diseases..or some RDS. My Rummy lowered my prednisone for the vasculits to 10mg (so basically, I am sick again too!).
I do need support right now from people who "get it". The results of the biopsy are not even back yet..but apparently the biopsy was not even done because there is any doubt about the diagnosis. They have made the vasculits diagnosis already. I suppose the biopsy helps with which type of vasculitis, which type of medications in addiction to the prednisone to use to treat it, and apparently it will most likely verify the lupus diagnosis.
I know I have been really hard on my finance. This is not intentional but he is supportive and amazing and I don't really have a support system who has dealt with these issues. The nerve pain is a new one on me too...despite years of neuropathology...joint pain..all that fatigue and hx of a major surgery involving a kidney.... this pain beats it all...
I am also having a hard time understanding and trusting my doctors!! My rummy is really vauge about the prognosis. She tells me with treatment I will be better and back to work in about 4 months. It is hard to believe that with the way I feel and what I read about vasculitis. When I bring up issues like disability-I feel like she sort of blows me off. I could be overwhelmed and taking things personally, but it is as if she doesn't realize I have an entire life, three children, and money issues to plan. My finance is permanently disabled due to lung disease....so it is not easy to just live from day to day and not make a plan for the future.
Okay..that was sort of a vent and sort of asking for help!!! I do need some feedback, support, encouragement. Sometimes I feel ready to accept I may have to change my entire life due to this and see what I need to do to for that...other days I am unwilling to accept any of it. Is this normal and part of adjustment?
thanks for being here...
Gentle hugs poetgal
Course the emotional roller coaster ride is a normal part of coming to terms with life ultering painful and frustrating lupus.
I'm sorry you are having such a rough go of it. Please remember to follow the golden rules of rest nuetrician and keeping your joints and muscles moving.
Also find as many ways as you can that help you relax. Tension and stress are number one enemies. (aint that a kicker) Hey you have lupus, but what every you do, dont get stressed out about it. Hahahahaha
Has your sweety come on the board to the family member section. It might help him understand and get some support for himself in all this
Oh look ... a cookie
Wow, whew...hugs.. I am so sorry you are having such a rough time, them giving you a rough time. The mistrust, the pain, the uncertainty must be so overwhelming...and children who need you more too..a big tight head hug..squeeze.
I would sit down and be straight up with your Rheuma...it is your life. Tell her you need more than a vague reply from her. Set up an appointment to discuss your condition... not to examine you. Research more on your condition and ask questions...the nerve biopsy, vasculitis, type...so you will be arm with knowledge to ask the right questions. Bring a notepad...
Vasulitis is an inflammation of the blood vessels. Here I did a quick Google...follow the link. It list many types of vasculitis on page two....
Peripheral Neuropathy..in brief...follow the link..
If you lost total faith in her, perhaps seek out another one..does she have colleagues in the same office? If she is apart of a hospital maybe seek out the board. They have meeting regarding patient cases...prognosis, diagnoses, procedures and etc. Or ask your primary for a referral or let your finger do the walking.
Changing is hard to do. I struggle with that myself and it is just me and my husband. And I think mine is overwhelming. I can only imagine how you feel with children.
Humans we are adaptable creature, but we mourn what was, we miss material things, we miss objects, we miss schedules, we miss activities. In reality all irrelevant things, things like that can be replace...changed.
We miss who we were...how we engaged with others, work..it was our life..but we can change and a forced change is hard. It is easier to be open to change, create a solution, a plan...and find the smaller joys in life instead of the occasion.
There is a solution for you, for your children.,..you just have to be open to the change.
Hard..I know. I fight with it sometimes daily..and many days I go along. We stumble, we become more in tuned with ourselves. More focus on what is important, rearrange our priorities, change friends, change schedules....
We mourn our past life again. Then we get tired of waddling in our self pity, take control of ourselves and again we move forward stronger...and not sulk in what was...
Soon the changes will be the old and we live on...Maybe find a good spiritual read to help you through. Bible, Buddhism...or a good author on spirituality in life, in the heart, in the mind. Doesn't have to be religious. Or even a psychology book, on how to change..
To live in the day is indeed important and financially we have to plan for the future. Those two I think are separate and to alleviate stress, take life one day at a time. Me, I am doing it moment by moment...I had to go with a smaller time frame...
The way we handle things emotionally and mentally differ..you will find what is right for you...keep looking. Strive for wholeness and less stress...
After I post this I will kneel and pray for you, and ask for extra blessings to be graced upon you and your family..
I believe Oluwa has summed it up well, you are right to feel how you feel and most of us have experienced the misunderstanding from others.
I too will pray for your health, both mental and physical.
Well, you can see how wonderfully supportive the site is. You have come to the right place.
I read your post and the responses here and in the introduce yourself section. Wow! I have been reading about Vasculitis for years, having it myself, and I learned something still, from SaySusie's explanation.
I currently have little "blood spots" on my arms (quite a few of them, actually), and I had not had them before. I did not know they were from the vasculitis. See, learn something new every day!
As I told you in our PM, you cannot go wrong getting a second opinion. Feeling nervous and unsure of things with your current physician is not good. You need to have a good relationship with your docs - they are part of your team (someone, I think Sits said something really good about this in another thread). If you go elsewhere and they verify what your doc is telling you, it will help you to feel more assured of her treatment of you. If not, if they give you different information, you might want to consider making a change. We are in charge of our health care team (I know you know that, as you are part of a team at work). We are the central focus of all of the care provided, so we need to be comfortable with our team members. You sound very unsure of your Rheumy, particularly. Everyone here can relate to you having felt that way at some point in time. Some even have special names for their archnemesis (Rheumy).
I feel silly giving emotional advice to a mental health worker - but I hope I am doing okay.
Also, don't know if you have pain and problems typing sometimes, but you should look into voice activated software, if so. I am just getting ready to start my Master's program in nursing, and the school is getting me some voice activated software. Some days, I just can't get the old fingers to do the job.
We will all be here for you, and we will support you in whatever way we can.