With all I have learned in the 5 years after my diagnosis I can honestly say I was very fortunate. When I finally went to see a doctor I was finding myself in a hospital two weeks later. With me living in southern Germany and with that a part where Lyme disease is common I was tested for that first because the general symptoms are similar. I had lost weight, only weighing 47 kg and my parents were afraid I was bulimic. Having been only 17 years of age it would have been a probable explanation for the weight loss. I also suffered from fatigue and the typical butterfly rash, the latter I covered up because I was ashamed but when I was finally too weak to do so my doctor could see it and called a rheumatologist, who shipped me off to be admitted to a hospital.
After two years, right with me finishing school I could finally accept being ill and I seek help in a support group. Sadly I have no Lupus support group close to me but the patients under 26 meet once a year for a weekend to exchange experiences. The friendships I build there are really helpful and we have a deep connection. It is probably because we all have similar problems and we feel ourselves understood.
It was in that year that I decided to do something and I became actively involved in the self-help group and helped plan our next meet and I am a telephone contact to answer questions. This involvement gives me a sense of accomplishment back. Before I got ill I was an avid handball player and gymnast and I was a lifeguard with the German life guard association. In the hospital I was told to stop doing all strenuous sports which meant do no sport besides a little bit swimming …
I stopped handball and gymnastics as I already had lost a lot of muscle strength and my so called teammates there all but kicked me out of their lives when I wasn’t able to pull the weight anymore. That hurt a lot. I was only 17 and all the changes in my life were devastating but thankfully my friends from the life guard association didn’t give up on my and did all they could to coax me out of the symbolical hole where I was hiding aka my room. They called and wanted to meet with me and never let me alone. I also was and still am a swim instructor for younger kids (I am doing this for 8 years now) and this was what kept in and near the pool. Although I wasn’t able to qualify as a life guard for 4 years I didn’t give up and got reinstated after passing the test. (I had to train for 4 years and normally I would have had to redo the test in 05 [test is to be redone every 3 years]). I am mighty proud of myself for requalifying and I intend to stay a lifeguard for as long as I can.
Being in the self-help network gave me the chance to go to a couple of conferences and learn many things about a spectrum of rheumatic diseases as well as meet many different people which all are involved in raising awareness that rheumatic diseases can be found in every age group, even infants.
I know of two special pediatric rheuma clinics in Germany one of them I have already visited but only as a guest, not a patient. I was too old and I never saw a pediatric rheumatologist. One of the kids in my swim training has arthritis and she was in the clinic during holidays and when I heard that and I knew as was going to be in the town I visited her and got to know the clinic. It was a great experience and many friends of mine who have been there two tell stories about deep friendships which have been formed in the clinic. For all of us it is important to get the feeling that they are not alone and that there is someone out there who understands our every difficulty. The experience to be able to call someone I the middle of the night who really understands the pain which comes with insomnia is comforting. The most of us have to take more than 4 pills a day and some of the medicines used to treat Lupus have serious side effects. Take the steroids (cortisone) it diminishes the bone or better say effects the calcium consummation of the bone (it lessens it) other meds suppress the immune system and we can catch every cold out there. Some meds make you sleepy or depressed or you gain a boat load of weight. (I have three different sizes clothes at home) We all know the list of side effects is long but giving in and feeling sorry for ourselves doesn’t help. We have to see the proverbial light at the end of the tunnel and with the news of Benlysta in the US I am confident that it will come to Europe and Germany too and will help! (Fingers crossed)
What are your ways to the diagnosis? Feel free to share.
