Hi my name is Rena McDaniel and I write two blogs: The Diary of an Alzheimer’s Caregiver, where I deal with being a caregiver while dealing with my own diagnosis of Felty’s Syndrome. The other is The Million Mile Blog, it is a travel planning, review and tips blog. I live in South Carolina with my husband of 23 years and my mother. I have two children and two grandchildren (with #3 and 4 coming in December when my daughter has twins!). Thanks so much to Jade for hosting me today.
Felty’s syndrome is a complication of patients who have rheumatoid arthritis. It is diagnosed by the presence of three things: rheumatoid arthritis, an enlarged spleen and an abnormally low white blood cell count. Patients with Felty’s syndrome can have more infections than the average person and can develop leg ulcers. Felty’s syndrome is uncommon. It affects less than 1% of people with rheumatoid arthritis.
I was diagnosed three years ago with Rheumatoid arthritis. I was sick for a long time before this diagnosis. At the time I was being treated for a car accident that I had in 2009. At first I was just sore all over, especially my left arm and neck.
I was first diagnosed with a strain. After I went back to work I began to have more problems. One day my feet would be sore and swollen and I would secretly take off my shoes to work. The next day my hand would be swollen or it might be my shoulders. I was then diagnosed with Fibromyalgia. I tried physical therapy, acupuncture, medicines etc. Nothing seemed to work. It got so bad that I was no longer able to work. I couldn’t drive because I couldn’t raise my left arm or look over my shoulder. I kept getting treatment and it seemed I was getting worse. I finally just gave up and for almost a year I was pretty much bed ridden. Things were happening in my life that were stressful: my son was serving in Afghanistan, my husband getting laid off, my daughter graduating and both of my children getting married. Everyone kept telling me I had to fight this and I don’t know how many times I heard that it was all in my head. All I knew was I felt very sick. I couldn’t eat because my stomach was so swollen. I quit having bowel movements. I went on this way for a long time and I honestly felt like I was going to die.
My husband finally talked me into going to the hospital ER. They ran tests and my blood counts had bottomed out. I don’t remember a whole lot of what happened, there was alot going on at once. I remember a doctor telling me I was very sick and that if I had waited another three hours I would have died. I was given three blood transfusions and put into the ICU for about a week and a half while they ran, as they told my husband, every test from A to Z. I had eleven doctors total. This is when I was diagnosed with RA and I first heard the words Felty syndrome, even though it wasn’t explained to me. I admit I was just glad not to hear it was all in my head. At first the doctors didn’t think that I would survive they called my family in. My siblings from SC and FL soon arrived. My son was stationed in Japan at the time and the Red Cross flew him home. I will always be thankful for that.
As you can see I did survive. I spent three and a half weeks in the hospital. When I was released we packed everything we had up and moved to SC to start a new life. My husband had a new job with medical insurance, even though I was preexisting for the first year. That is what started this journey through the ups and downs of Felty’s Syndrome.
Today with the help from a great Rheumatologist and a new infusion drug called Rituxan I am able to live a somewhat normal life. I still have to be careful about infections but I can take care of mom and do most of my house work. I don’t vacuum or mop anymore, I can’t lift things very well and sometimes I just get so tired I can barely stand up. But I am alive and very thankful for all the help and support I get from my husband and family. My husband does the manual work that I am unable to do and between the two of us we have made a great life in South Carolina.
Follow Rena on twitter at: @rm29303
You can read my post on the topic of ‘How has life changed since you’ve had a disability?’ over at Rena’s blog here.
I have pain all over the place, but ranking at the top of the list is my lower back. I’d previously had facet joint injections in my neck and shoulders some years ago, but they didn’t help. However, it was before I’d had an MRI (as it took around 8 years of arguing to get one) and so the consultant was ‘guessing’ at what the issues were. Later on the MRI did clearly show an area in my lower back that had degenerative lumbar disease in the facet joints, arthritis, and others issues. It made a much better target for injections than anywhere else, so I thought it was worth a try.
It took another few years of me arguing for them (nothing ever just seems to just happen on the NHS!) After getting nowhere locally, my Ehlers-Danlos specialist at the Royal National Orthopaedic Hospital at Stanmore sent me to see her Pain Management college, who gave me the go-ahead for bilateral lumbar facet joints at L4/L5 and L5/S1 (so four in total).
A few days passed after being told I could have them and suddenly I thought – what the hell am I doing fighting to have needles put into my spine?! I was sedated during my previous injections, but I did have some memories of the procedure. I remember my consciousness kind of returning and thinking ‘please stop now.’ I was later told the sedation didn’t actually knock you out, but simply wiped your memory – and that you would be aware of what was happening as they did it. This memory built up in my mind until I was convinced I’d be strapped down with horrible painful injections into the middle of my spine, then I’d just forget afterwards so I didn’t realise how awful it would be. So I was about 500 times more nervous for these injections than previously.
The whole topic became a ‘do not discuss’ subject. As soon as I thought about it I went into a state of panic, so there was no research done as I normally would, and I didn’t even allow my mum (who accompanied me) to talk about our arrangements of getting there until the day before. I just wanted to block it totally from my mind.
We travelled to Stanmore the day before for two reasons. The first that I can’t make the journey there and back in one day, and the second was that my admission time was 7am. Ugh!
Although I wasn’t having general anaesthetic, I was told not eat after midnight, and no drinking after 6am. It was the latter I’d struggle with as I’m constantly thirsty.
I arrived at the hospital a couple of minutes before 7am and had a choice of parking for the first time ever! When we reached admissions there were a few people waiting outside, but when the queue got the doorway I realised the room was packed with both people queuing, and waiting in the chairs. It wasn’t the easiest getting my wheelchair in and out with no room for manoeuvring. There was only one member of staff dealing with everyone. The older lady in front of me didn’t speak any English, and was soon joined by an interpreter. The staff member made a phone call and I heard him say, “Are the wards still closed, there are a lot of patients here?” He then informed the interpreter they had a bit of a wait ahead. I was next, and was told the same thing.
I was a little cross, only because getting somewhere for 7am isn’t very easy for me and more importantly 7am = grumpiness! I did later found out the wards were opening for the first time after being closed for two weeks over Christmas – so I assume the delay isn’t normal.
I reached the ward and was met with a number of friendly nurses and health care assistants who welcomed me, and showed me my bed. The lady with the interpreter was in the bed opposite me. A nurse admitted me with a huge pile of paperwork, most of which seemed irrelevant in my case! I was asked a couple of times if I had any allergies. She then took swabs for MRSA and then took my blood pressure (which I hate, as it’s very painful. The muscles in my upper arm are very tight and particularly sensitive). I was told I was third in the queue – and the doctor would be seeing me beforehand.
A couple of other patients got in the bed and went to sleep, which seemed like a good idea – and would also make the time pass. However every time I was about to drift off I was woken by someone. The first to measure me for pressure stockings, then again to tell me I didn’t need them. Then a doctor who was working with my consultant arrived to explain the procedure. I was glad it was her and not my consultant as she was much warmer than my consultant is, which helped. She spent a lot of time explaining how much time they took to sterilise everything to reduce any chance of infection. I wanted to rudely interrupt and say that at that point, I didn’t care – I just wanted her to promise she’d knock me out! She then went through the possible risks – infection, numbness in the legs, pain flaring up afterwards and in a very tiny amount of cases nerve damage. She asked if I had any allergies.
Finally I could ask the one thing I wanted to know.
“You will be sedating me, right?”
“Did you ask for it before?”
“Yes,” I emphasised.
“Then we will.”
“Will I know what’s happening?”
“Well, some people do sleep.”
“Please make that happen with me. Please.”
Then the pharmacist came to take note of my list of medications, and asked whether I had any allergies, then a number of nurses came to tell me, “It won’t be much longer.” Then that they were on their way for me, only to still be there sometime later!
Eventually the porters did arrive and wheeled me into theatre. A nurse went through the final questions – checking I knew what procedure I was having, if I’d had any before, if I had any allergies and if it was definitely my signature on the consent form. The nice doctor then fitted the cannula into my hand, before I lay down front-first on the table. They put an oxygen mask on me, a clip onto my finger to measure oxygen (I’m sure that has a proper name) then to my annoyance – a blood pressure cuff which I was told would be taking my blood pressure every few minutes. It took it twice, before I told the nurse how painful it was. “No problem,” she told me cheerfully, and moved it onto my leg instead which was much better. She then began chatting to me about my hobbies and jewellery making, before my consultant began putting the sanitising fluids on my back. The nice doctor then began to input two injections of sedation into the cannula. I closed my eyes – trying to relax. She then asked if I could still hear her, and I said yes. She thought I’d gone to sleep, and I said I hadn’t felt any sedation yet. She said she’d keep going, and added two more tubes.
The next thing I remember is feeling a bit of pain in my back, and a nurse telling me it was all over. I definitely hadn’t been aware of it. I was taken into recovery for awhile, still very sleepy and groggy. A nurse chatted to me for awhile, and I remember telling her to say thank you to the nurses, as they’d calmed me down a lot beforehand. She promised she would. She then asked if I knew which ward I’d been in.
“It began with J…” I answered.
“Jackson Burrows is the only ward beginning with J.”
“No, it wasn’t that. Was it Diane something?”
“I guess now wasn’t the best time to test your memory?” she laughed. She then came back and said that unfortunately they’d moved me to Margaret Harte Ward. I began to worry if anyone had told my mum as I knew she was planning on getting a cup of tea while I was in the theatre (as she’d very kindly not eaten/drunk anything in front of me while I couldn’t).
As the porters wheeled me out of recovery, the nurse suddenly called for them to stop. She dug through a cupboard, and pulled out another blanket to put around me. “Sorry,” she said to the porters. “I just didn’t want her to get cold on the way back.”
When we got back to the ward I spotted my mum very quickly and realised it was the ward I’d been in all along! The nurse handed over to the ward nurse, and said that my blood pressure had risen quite a bit during the procedure, so they needed to keep an eye on it. Argh, more blood pressure checks!
I was left to sleep for a bit as I slowly came round. A nurse then came round to do the blood pressure test. I admit I groaned, and said the test was hurting quite a bit, then of course after gritting my teeth the machine malfunctioned. Just one more time, I was told. Luckily it was back to normal, and as she took the cuff off she realised lots of red marks had come up all the way round (which are still there today!). She gave me an apologetic pat. I asked if she could take my cannula out as it was pulling quite a bit. She took a look and said it was quite red, and that someone would do it before I left. (Well, one would hope so!)
I was told to stay until lunch time, and then I would be discharged. The nice nurse who admitted me then walked past and so I asked her about the cannula, and she said no problem and took it out. She also checked my ‘wounds’ (just slightly larger than needle marks) and said she was happy with how they looked.
Still waiting opposite me was the older lady with the interpreter. I heard a nurse say to her that her operation wasn’t going to be until mid-afternoon – yet she’d been admitted at 7am! It seemed mean to make her wait so long, and I assume the NHS had paid extra for the interpreter when they could had admitted her at the 11am or 2pm admission times. I noticed the little old lady chatted non-stop to her interpreter, which made me smile as I could just imagine in the 7+ hours the interpreter sat with her she got to hear her entire life story.
I left at 1:40pm, slept all the way home, slept all afternoon and very unusually for me – all night!
So all in all – it wasn’t nearly as bad as I dreaded. The staff – particularly the nurses, were lovely. There were lots of touches of kindness, like the nurse in the theatre distracting me from my nerves, the recovery nurse chatting to me as I came round and making sure I was warm, and the staff back on the ward who took care of me and offered me toast and regular drinks when I came round. They all made it a much easier experience. Also – the NHS really, really want to know if you have any allergies.
I’m in a lot of pain now which feels different to my usual pain. I was warned I may flare up, particularly where the needle touches the bone – so I’ve no idea if it worked yet. I think I need to wait for all of that to calm down over the next couple of days before I can tell if it helped.
An image of a facet joint injection
When you’re in constant pain, it’s very easy to focus on it. It can become all-consuming, and the more you think about it – the worse it feels. Someone once suggested to me that I try crafting as a means of distraction. I have to be honest, I was a little annoyed – how would painting a pretty picture take my crippling pain away? It seemed a little dismissive. Plus there was also the fact I’d never thought of myself as a particularly creative or artistic person. At school even my doodled stick figures ran screaming in terror, and my art teacher made it clear it wasn’t my forte, but I thought I’d give card-making a try.
I enjoyed making them, but they weren’t that great. I’d look online at all the beautiful designs people were creating, and it just didn’t feel quite like me. After I’d spent a fortune on card-making supplies, I decided to try my hand at jewellery instead, and in doing so found a new passion.
The early days of making jewellery weren’t easy – my hands cramped up terribly, and I was left with blisters all over my skin. In time my dexterity improved and it helped strengthen some of my muscles in my hands. And it was true – when I’m busy concentrating on making a new item, my brain is focused elsewhere. It doesn’t make the pain go away, it just redirects my attention so I’m not thinking about it, which is really helpful.
Once I joined the world of crafting – I found more and more other people with disabilities were also there, and finding an outlet in art – by painting, woodwork, ceramics, photography or anything in-between. For example a friend of mine makes ‘pain monsters’ from felt when she’s having a bad day, which helps her create a visual representation of what she’s feeling.
It took me quite a long time to find out what was wrong with me. Many years of fighting and pleading with the medical community to stop shrugging their shoulders, and to do something. When I was told I had Fibromyalgia, it came as something of a relief. I felt like I wasn’t alone – there were other people with this stupidly long list of symptoms out there. I wanted to commemorate the end of that fight, that also informed people about the condition. I made my first Fibromyalgia awareness bracelet not long after, and then began to receive requests to create ones for other conditions – including some I’d never heard of before. People liked the more personalised feel to the more generic rubber bands that are usually sold. My biggest seller was for Marie Charcot Tooth Disease, and eventually the national charity began to order from me so they could sell them on their website.
I also auctioned lots of my bracelets off for the Fibromyalgia Association UK, and also for Ehlers-Danlos Syndrome related charities when I was diagnosed, a genetic multi-systemic connective tissue disorder. It made me feel like I was helping, even in one tiny way.
An Ehlers-Danlos Syndrome bracelet featuring zebra stripe beads – the symbol of the condition
It’s very common to walk into a shop and see a row of pink coloured items for Breast Cancer awareness. Yet there are so many other conditions that people often haven’t even heard of before, let alone understand what they entail and what it’s like to live with them. People have often told me when wearing one of my awareness bracelets it has sparked conversations with friends and family who had never asked about their health before.
Fibromyalgia Awareness Bracelet
Fibromyalgia Awareness Bracelet 2
The colours of the bracelets are usually picked by the existing awareness ribbon colour, and if there isn’t one, then by the colours of the national organisation/charity for the condition. Sometimes there are obvious symbols that can be included as charms. Fibromyalgia often has an association with butterflies, Autism with jigsaw pieces, Charcot Marie Tooth Disease with hands and feet. Sometimes a spoon charm is added from the fantastic analogy “The Spoon Theory” by Christine Miserandino, to which many people with chronic illness resonated with. My most commonly used charm is simply a silver ribbon with the word hope written on it – as I believe that’s something we all need in some form or another.
Arthritis Awareness Bracelet
In April this year I had to stop working due to my health continuing to get worse. Being able to make jewellery – even if it’s for twenty minutes in the middle of the night when I’m struggling to sleep, has helped keep my spirits up and creativity flowing.
If you’re interested in seeing more of my jewellery and awareness items you can find me under Sparkly Place Jewellery on Facebook.